Diagnosed with Cirrhosis and Metabolic Syndrome this year, after about 2 years of struggling with various symptoms and no doctor able to explain what was wrong with me. The Liver Specialist also said i had Encephalitis with Ammonia levels higher in my blood than normal. Since a Biopsy in 2003 diagnosed Nash, plus co-morbid Type 2 Diabetes, High Triglycerides, and a variety of other health problems, my Specialist tells me I could live another 10 years. I wish I was as optimistic. All I have read on British Liver Trust and elsewhere, (that NASH is a serious prognostic indicator for death), given these problems, I feel his 10 year optimism is not accurate. He will not recommend me for transplant (at 69, with lots of other health issues). My attitude, (when diagnosed) was serious ‘relief’ that they had established a cause of my problems. I have become more motivated to leave my family a legacy for generations to come. This is how I am keeping myself active and motivated. However, I am terribly disappointed with the lack of understanding by the medics of how having NASH for so long, did not wake them up as to what would eventually happen to me. The symptoms have been alarming to me for a long time, but I was ‘fobbed off’ by some medical people by saying my symptoms were all psychological. For those who do not know - a Liver Ultrasound only tells them that I had Fatty Liver (not what kind). Years ago, (2003), a Liver Biopsy concluded I had NASH. It took me pressuring them, to have a Liver Fibroscan Test, to determine that, now in 2019, I have Cirrhosis. This test has been available for 5 years. Why was I not given it previously? How long the Cirrhosis has been with me, I do not know and neither do the medics, so how they can give me a lifetime prognosis of 10 years, is a mystery to me. Two days after the Specialist saw me, he rang me to say I now had Encephalopathy, with higher than normal levels of Ammonia in my bloods. I have Ascites as well. I will add, that I am not afraid to die. My quality of life has been abysmal these last 2 years.
Now I am ‘rushing’ to get my life in order, but, am I justified in being upset by my treatment (or lack of it). Would anyone else be wondering how long they’ve got, as I am? Has anyone else had the same issues as myself, with feeling a lack of care? I eventually had to complain before I got any answers - not something I am used to doing. I firmly believe that a diagnosis of NASH, together with Diabetes, should ALWAYS require a Fibroscan Test. I have lost a lot of weight very quickly. They even put that down to my history of depression. Believe me, I am NOT angry, just worried for the many more people who are suffering unnecessarily, like I have. It is a poor indictment of Specialist competence.