Diagnosis and Prognosis Inadequate

[Splodge60]

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.

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Hi,

We are sorry to read what a struggle you have had with your diagnosis. Today is International NASH awareness day. At The Trust we are really trying to raise awareness of NASH and the importance of fibrosis testing.

If you would like to have a chat the helpline is open today. Take care, you are not alone here.

Warm wishes

Trust1

[Radnor]

No wonder you feel so awful, depression is a horrible condition and you need to discuss this with your GP and get him to liase with your liver specialist. It appears that you were actually diagnosed in 2003,a biopsy is far superior to a fibroscan, I have had 4 , the last one said I have cirrhosis. My consultant was concerned because these results were not confirmed on my bloods . He arrange an ARFI scan , like you I was diagnosed has having Nash.I was very aware today because I had the results of my ARFI scan. It is only for people who hae Nash, with lots of other criteria eg BMI under 30.Like you I was told , he would expect me to be around in 20 years! ie average life expectancy for a woman. 84 I am curently 64. Providing I lost weight of course so that even with cirrhosis, was like your prognosis. BUT today I went to hear the results of the ARFI scan. I do not have cirrhosis, I do not have severe fibrosis, I do not have fibrosis! I have a fatty liver.The consultant who did the scan said he was not a fan of fibroscan, the scan I was having actually ensures it actually was just my liver being measured and he could see an accurate image of my liver. I was told today that fibroscans do not work on 20% of people. You were definitely given the best investigation . a biopsy . The prognosis you have been given is not a figure plucked from tin air, its the national average life span of a man.Eating the correct diet for you is crucial, ask to be referred to a dietitian.

Your depression can be treated, I saw my Mum suffer and its missed me but my daughter too suffers. I noticed within 2 days when she had my Granddaughter, she had post natal depression. She has suffered terribly since too. After trial and error she finally has a drug that works for her. Ammonia in your bloods can affect you brain too, Others know far more about this aspect. From what I have sen on here ascites is also treatable. A huge number of people on ere would be so thrilled to have a prognosis of living to at least 79.When you next see your liver specialist take a friend or relative with you. They can support you and ask questions for you if need be. You want to see a dietician, want to know about ascites and what are they going to do re the ammonia, along with an explanation of encephalopathy a fibroscan is inferior totally to a biopsy. Look what has happened to me? Your depression is affecting so much. Hope you get the right meds sorted asap. Hazelxx