Continuing Liver Drama

[Splodge60]

I joined this forum two or three years ago in an effort to obtain some feedback and understanding of some of the liver problems I had at the time which I could gain no knowledge of from the medics with whom I was involved. In that respect alone I have never been disappointed in you wonderful Forum members. You have asked me for more information as you have also struggled to understand the complexities of my health story.

You have unselfishly tried to use your own knowledge and experiences to help me by making suggestions, offering advice. As my response to all this help I have received, I too have attempted to reciprocate your kindnesses by sharing some of my own thoughts and ideas in order to help others in similar situations to myself. This has, first of all, led me to join other Forums under the Health Unlocked banner.

I have gained solid friendships along the way. My knowledge and understanding of liver disease has grown as well. In some cases your advice has led me down paths I never expected. I have learned such a lot and continue to do so. My heart is full of gratitude toward you all

So, where was I 3 years ago and where am I now? My LIVER story originally began in 2003 when I was initially diagnosed, via biopsy, with NASH. I would argue that it commenced long and longer before that, but I have seen nothing in the literature exploring this issue.

After receiving your help in 2017/18, I spoke to my GP about a re-referral to, the Consultant whom I shall refer to hereafter as ‘The Liver Man’ who had discharged me years earlier because he felt I was stable (despite incredibly High LFTs. Within a range, for example, of GGTs being between 1000-2000!!! The purpose of my request was to have a Fibroscan to examine the status of my Liver.

It was 14 months later when I got the test and 1 month later when I found out the result via online Patient Access. It was 3 months later before any medic spoke to me about my discovery. On my record, written bold as brass was the diagnosis CIRRHOSIS !!! No medical person at all attempted to discuss this finding with me and, therefore, I felt led to complain to various authorities about the GP practice and the Consultant. I was also led to become actively engaged in my own research and with your help, gained a little more understanding of Cirrhosis in general, but I still await feedback about it in relation to myself as the Liver man was not a lot of help.

Since then, I have received diagnosis after diagnosis as my body has deteriorated to such an extent that I am now receiving Palliative Care, plus I have also been prescribed Liquid Morphine as certain aspects of my pain levels get to be too much. I am scared witless about having to use this.

The latest:-

At the beginning of October I brought up in my mouth x 2 marble sized blood clots. These were not as a result of coughing but, my mouth continually fills up with fluid and that same fluid is always blood, in a morning. This huge blood loss I get each morning when I awake. It now is happening most of the day as well now.

Next - last week I underwent a Gastroscopy because the Liver Man had seen something abnormal, at the bottom of my Oesophagus, after a Urologist had sent me for a Kidney scan. (This was required after 4 weeks of heavy bleeding from my urine!!). I’m now taking regular iron !!! That was last Tuesday. On Wednesday I brought up an even larger blood clot again. I put it down to the Gastroscopy (which found a Hiatus Hernia and Varices). Not heard from the Liver man about that yet!!!

On Saturday morning the blood clot was the size of a 50p piece. This sketch is getting silly - I thought. I caught this along with about 5mm depth of blood, in a container. I then awakened hubby (it was about 6.30am) and asked his advice. I rang 111 and eventually spoke to someone. About 2 hours later I spoke (on the phone) to a very pleasant out of hours GP. He very reluctantly said I should go to A&E.

I made it very clear to him that this was a waste of time but he implored me to go there on the grounds that, should anything more serious occur, then I would be in the right place. I really did not wish to go but knew, deep down that I had no choice. I was right of course as the Junior doctor battled in his mind to ask me all the standard questions he was being taught to ask. I predictably was sent home “as nothing life threatening was happening”.

Emotionally I confess, I am at rock bottom and my anxiety levels are through the roof. I get conflicting advice from family and friends. My kids tell me that as everyone puts this down to Warfarin why do I not just accept that and stop searching for more information and then getting upset because no-one can help me.

I would do that if someone could explain, firstly, as I have both a clotting problem and a bleeding problem, why is my INR in normal range and why does everyone else on Warfarin NOT suffer as I do? Secondly, why do I now have a chronic DVT in my right leg if Warfarin is such a wonder drug?

have taken you through this journey to ask of you - am I right to feel like a ticking time bomb at present? In addition how can I get this post on the Hughes Syndrome Forum, as they, like you have been so good to me????? Many thanks to all who find the time to read this.