I wanted to write this last night but I fell asleep. Nothing unusual there then!!!!
In the last 2-3 years I have ‘visited’ one Consultant or another about some of my symptoms. The most valuable lesson I have learned, from so doing, is that the Liver Medical fraternity themselves are unable to fully establish the impact of ALL body mechanisms on how they specifically work with Liver patients. As a result, if they do not keep up with some current thinking on Liver issues, their ability to treat all their liver patients to the optimum level, is found wanting.
Add to the mix the egos and personalities of both Clinicians and Patients, there lies an underlying ineptitude for dealing with patients fairly and with an open mind and huge potential for misunderstandings and misconceptions on the part of everyone involved in a Liver Clinic.
As a consequence, lots of mistakes and horror stories abound concerning how to deal with this patient or that patient!!!!!
Obviously, I can only speak from my own experience so my examples are only from this resource pool. It is hard, therefore, to get a completely unbiased perception of all the interactions between Clinician and Patient.
1. In 2002, upon moving home, I was required to carry out various tests at my new GP surgery. This threw up two major disease entities, namely Diabetes and Deranged Liver Function Tests. Nobody, including myself knew HOW LONG these two factors had been slowly impacting my health It could have been 6 months or 6 years.
2. After a very short time I was under the care and treatment of an Endocrinologist Clinician who helped me come to terms with how diabetes would or could impact on my quality of life.
3. Regarding the Liver, despite an immediate referral to a Gastroenterologist, it took more than a year for referral, various tests and a Biopsy to conclude a diagnosis of NASH - Non Alcoholic Steato-Hepatitis - the more serious form of Fatty Liver. I was informed that I would be monitored regularly and it would probably be for the rest of my life. Such monitoring required only blood tests. After a few years, when they kept telling me that I was ‘stable’ - I was discharged from the liver clinic. No attempt was made then or even now to give me a physical examination. No attempt was made to get to understanding what was the cause, effect and impact of this very serious disease upon the rest of the body. Links between Diabetes and NASH , for an example, were being discussed seriously in the medical literature, despite findings of the effects of NASH on multilple body organs.
4. Fast forward to today and I now have Cirrhosis. I bi-passed Fibrosis on the way due to lack of what I would call ‘deep monitoring’. Again, nobody knows how long I have had Cirrhosis. I really had to struggle hard to get a Fibroscan, simply because I knew that I had deteriorated significantly. My problem was highlighted when I started getting ‘accusations’ from my GP practice that my symptoms were ALL due to my history of mental illness. Even the Consultant would ‘hint’ at this when I read his letters.
5. For the sake of time I will just say this- I am now having to take Morphine and am receiving Palliative Care. Many of my body systems are unhappy and causing me untold difficulties. My Consultant informed me upon diagnosis of Cirrhosis - (a year ago). “oh yes, you also have Metabolic Syndrome and also, you will not be able to have a transplant”. These were both said as passing remarks as I was leaving the room. I did not understand then, what was going on with me but now I do, after hours and hours of my own research.
This story will not end well. I do know, however, that arrogance, lack of concern or care, and inherent prejudices and bias have played a huge role in my ‘Liver Story’ and probably the same is probably happening to you too. I would like to hear from anyone who is having to put up with this nonsense, as they try to cope (in a very lonely place), with a Liver that is on its way to packing up and, it would seem, nobody in the UK medical profession concerned with the liver, gives a damn!!!!! You then just become a Statistic for researchers to examine your records retrospectively. Incidentally I have kept very accurate data records for quite a while now but my own Consultant will not get his hands on them. I think you will appreciate why?????
No fibrosis 
Anyone with Cirrhosis from NASH?
"The most frustrating thing about being diagnosed with fatty liver or NASH is…"
NASH and NRH
