Hello everyone. Ive recently turned 47 when I was 32 when i became jaundiced, my gp took bloods and the next day phoned to say i was asked to go to the infectious diseases ward to be seen for tests. I was was a tues and I was moving house on the thurs. I felt really upset because I wanted to be home to get organised as you do. At first the doctos didnt know what I had and tested me for AIDS, leukemia and many other diseases. It was a tough time. I had many blood tests, bone marrow taken and liver biopsies performed. Six months later I was diagnosed with pcb and chronic active hepatitis.I unfortunately had the symptoms of both diseases. I never smoked or drank alcohol or took unprescribed drugs. When i was out with family or friends i hated waiting for buses or taxis etc, so i would always take my car. I worked as a nurse and did various shifts so I was constantly busy with a young family. After been diagnosed I continued working but changed to part-time. I was unwell at times with chest infections etc as i now was prescribed routine meds which reduced my immune system. At first my medicines worked well then about 2006 my lungs showed that the same antibodies which attacked my liver where ? attacking my lungs. I had to have lung biopsies which were inconclusive as I had advanced pcb I was to have a liver transplant in the near future. But through time my lungs began to heal which was great. I had to give up work because my symptoms became more acute. My liver really began to fail. I had developed oesphageal varices which i got tied, odema in my hands and feet, severe fatigue, nausea, vomitting, gastritis, diarrohea, pain and discomfort around my upper abdomen as my spleen had now become enlarged, osteoporosis developed painful joints and severe cramps in various parts of my body. I slept for 20hrs a day and even when i was awake i felt shattered. I then went for an assessment for 5 days to the transplant Unit to see if I should be put on the Organ Donor Waiting List. I had many tests to see if my body was ready and strong enough to receive a new liver. My husband and I received the news on the Fri. We were told YES which was amazing. My family and friends were so happy for us too. It was like a calmness had descended over me after being on a very long massive rollercoaster in which I never was able to get off. I only waited 6 months when my husband received the call. I received my new liver the next day. I never looked back. I did have a blockage in my bile duct which the doctors placed stents inside which were replaced every 3-4 months. I recently had the stents removed and not replaced to see if the stents have worked by keeping the duct open. So far I havent had any problems. I wish to say my Gp, my consultants have been brilliant. I couldnt have had any better care. Even now I have great continuous care. My Gp is only a phone call away. I know I am very fortunate but it should be the norm for everyone. I wish to hear from anyone with advice or support or if i can support anyone with pcb. please get in contact.
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