Keith, (one of The Trust’s original helpline volunteers), recently rejoined the team after a long and much missed absence during which he was treated for hepatitis C, and then the various complications of decompensated cirrhosis.As a result of that, he ended up undergoing a liver transplant.
We are so pleased to welcome him back on the helpline and are very grateful that he and his partner, Lyn have taken the time to share their experience.
Although many of those affected with hepatitis C will hopefully be diagnosed before cirrhosis occurs, Keith’s situation is unfortunately one that will keep on happening until awareness of hepatitis C is increased sufficiently to get all those who have been at risk tested (in the UK alone it is estimated around 500,000 people are still unaware they are infected).The longer somebody has hepatitis C, the more likely their liver damage will progress to cirrhosis, especially if they are also drinking alcohol.
Early diagnosis is absolutely key to giving people the option to make lifestyle changes and consider the treatment.Unfortunately once cirrhosis is established, the chances for successful treatment are greatly reduced and even when it is successful, cirrhosis will continue to progress.Once it becomes decompensated then a liver transplant is the only option and there can no guarantee that one will be there when needed.
Prior to the antiviral treatment, my worst symptoms were severe fatigue (that inhibited every attempt at “normal” life) and brain fog (that made any clear, considered thinking impossible). I presumed that this was because the disease had had free rein for around forty years without my knowledge and without medical detection. Indeed to arrive at the final diagnosis, Hepatitis C (Genotype 1b) and cirrhosis of the liver, was a lengthy battle in itself. Perhaps things are improving now, but on the whole, I found that GPs were woefully ignorant in following up quite indicative symptoms - vomiting blood (varices), swollen ankles and legs (oedema) and fatigue. Consultants also, (outside of the specialist clinics) tended to go for the most obvious conclusion, as I had been a heavy drinker in the past it was simply assumed that I had alcoholic liver disease.
The most important point I stress to anyone when they get diagnosed is to please make sure you rapidly become as well informed as you can be – and make sure your partner or other close family members are as well. Most likely it will be you who is the driving force behind your own monitoring and treatment.
I surfed the internet for information, and soon realised that as far as the UK was concerned, information was sparse at best, unreliable at worst and sometimes just downright wrong. When I found the Hepatitis C Trust I phoned the helpline and spoke to Charles Gore. He confirmed my fears that the disease was indeed serious and my symptoms indicated that it was at an advanced stage. Perversely this was something of a relief as I could now confront my situation and start to deal with it.
In retrospect I realise my symptoms began in the late 1990s, but it wasn’t until 2000 that any particular hospital consultancy was advised. I was diagnosed with liver problems and oesophageal varices due to excessive alcohol consumption, told to stop drinking completely, and that it would all be reviewed in 6 months.
No further investigation or tests were made. Luckily my GP continued to monitor my condition with further liver function tests. He became concerned as despite complete abstinence from alcohol for over two years at this point, my LFT (liver function test) results showed continued deterioration so he referred me back to the specialist at the hospital.
It was April 2002 before I was finally diagnosed with hep C, which I realised I had probably contracted almost forty years previously. A liver biopsy confirmed that I had severe cirrhosis. Luckily I was placed on the list of a hepatologist who was familiar with hepatitis C. It was his care and monitoring (endoscopies, ultrasound scans and medication) that began to give me a little more hope as I finally felt that someone understood and that anything that could be done would be offered.
From then onwards my health was carefully monitored.The support of my consultant and GP was very important in me maintaining a positive aspect throughout this time. Without it I do not think that I would have been considered fit enough to try the antiviral treatment (pegylated interferon and ribavirin).
I started treatment in September 2004 with great hopes.
Within two months I could hardly walk. I had felt fatigued before, but the haemolytic anaemia caused by the antiviral drug Ribavirin was devastating. The dosage was reduced with no effect so my consultant bravely prescribed EPO (erythropoietin). This is also a very expensive drug and not often used, so we had to wait for authorisation. It was hoped that it would boost my haemoglobin level, but despite several doses, there was no improvement. Eventually my haemoglobin went down to 6.3 (normal bottom of the range is 13.5 for a man) which meant I was referred to the haematology department; they decided to treat me with a course of blood transfusions. I also had to undergo a bone marrow biopsy to help diagnose why my haemoglobin level was not recovering. It was at this point that it was decided to take me off treatment after 37 weeks.
Though there is no denying the fact that the treatment is tough, I would still advise those recommended it to try it and persevere.The support given to me by the hospital was excellent. However you may need to be prepared to fight to have whatever possible extra support you may need in place.
It was now May 2005. The blood transfusions continued until they were happy with my haemoglobin levels but by now the cirrhosis was decompensated and I was starting to develop ascites, oedema, itching, jaundice etc.I was constantly fatigued and suffering from sleep reversal (awake at night and asleep during the day) and it became increasingly difficult to maintain any mental alertness.This is at a time when you need to be very aware of your drug regime and also maintain a very healthy low salt diet. Without help this would have been almost impossible. I had to be accompanied everywhere and the future began to look very bleak.
But there was renewed hope - in September 2005, the hospital finally responded to my consultant’s repeated requests and I was admitted for assessment for the liver transplant program.The stress by this time was beginning to take a toll. Both myself and my partner had believed that this would have been a mere formality – there was no way we could continue much longer as we were, without we feared, the inevitable conclusion.
Shortly after undergoing a very rigorous interview by the consultant, I was admitted to hospital to undergo a series of tests designed to assess my current state of health and whether I could withstand the surgery and have a reasonable chance of survival. The tests were numerous, tiring and lengthy - the whole process taking a week as an in-patient. Feeling as ill as I did it never occurred to me that they would not place me onto the waiting list. When I was discharged - whilst waiting in the lounge for a cab to take me home - I was informed by the registrar, that this was the case… apparently I was not “ill enough”. I realise that the shortage of donor organs make these very difficult decisions necessary, but I can assure you that at that moment, I hit rock bottom.
My condition continued to worsen - without someone to care for me full time this would have been a huge problem as I could do very little for myself; I forgot the shopping, cooking, cleaning, washing etc; I couldn’t get in or out of the bath by myself; I couldn’t put my own shoes or socks on; I couldn’t communicate clearly with anyone on any subject - essential or otherwise.But - most importantly, I was beginning to become confused regarding my drug quantities and that lead to the worst problem of all. I can’t actually remember any of this so my voice is irrelevant here - what happened next needs to be told by my partner. Inevitably partners are the ones who eventually pick up these end pieces: remember what I said about becoming rapidly well-informed and sharing the information with your partner? It could save your life.
When we first learned of Keith’s illness, we were completely ignorant of what it entailed: however, both of us having personalities that liked to know what we were dealing with, we soon started asking questions. Keith’s hospital consultant in the midst of his often hectic schedule could not have shown more patience in his explanations. Keith also researched on the internet and always made sure that he passed all information on to me and this proved to be essential.
By September 2005, as the disease increased his confusion, I was very careful in monitoring his diet and above all his medication. We had been told that it was particularly important to monitor the dosage of lactulose to ensure regular daily bowel evacuation to avoid hepatic encephalopathy. We discovered that this was a condition in which the brain function is impaired by the presence of toxic substances absorbed from the colon, which are normally detoxified by the liver. We read up on the symptoms; drowsiness, confusion, inability to perform simple tasks such as writing, incomprehensible speech and eventually, coma – a danger to be avoided!
One November Sunday in 2005, Keith stayed in bed all morning – unusual for him despite his condition; however as he had been sleeping poorly I thought nothing of it. By early afternoon, he still hadn’t moved and I knew that I must wake him to have his medication. His movements were slow and it seemed that he was still half asleep but the minute I gave him the lactulose he spoke – just one word whilst shaking his head – “Ugh nasty!” He sounded just like a child and very unlike himself. Subsequently we worked out that he had been under dosing on the lactulose by about half (NB - Please note you cannot rely on a patients normal abilities when encephalopathy is occurring).
However, at that moment I knew immediately what the problem was – I could hear the list of symptoms rattling around in my head. I knew that I had to get him to hospital; I was just about to call for an ambulance when I began to think it through. It was Sunday so if I called an ambulance it would take us to the A&E of the local hospital. Chances were that no one there would be particularly familiar with his condition and that no liver specialist would be available. As he was rapidly becoming more incoherent and losing control of his bodily movements I wanted to get him to where his consultant could easily be contacted. I rapidly called the out of hours G.P. (Grabadoc!) and in the meantime attempted to dress Keith and pack a hospital bag. Luckily the G.P. arrived in about 45 minutes and was not only prepared to listen to me but also agreed that Keith would be better off where his consultant was available. As it was a request from a medical professional we were able to get an ambulance to take us to the hospital. This illustrates that you need to be aware of all probable consequences and situations, even at the most panic inducing times, for I am sure that without my explanation and request, and of course the GPs co-operation, we would have ended up at an inappropriate A&E department with no-one who had the appropriate knowledge to help us.
As it was, on arrival, we still had to go through the formalities that can take hours and again I found that I had to explain to the poor junior doctor who had drawn the Sunday evening shift, exactly what the problem was. But – there were people there that they could contact for guidance.
However I must say that there followed a very bad night. By this time Keith was in total confusion; he didn’t know where he was or what was happening; he couldn’t understand anything that was said to him or speak in return; he had developed liver flap in his hands and was shuffling around as if demented. When, eventually taken up to the ward, they finally managed to get a drip in his arm he began constantly to pull it out as he aimed for the lavatory. There was blood everywhere. He was up and down and to and fro to the lavatory all night. If I had not been there to ensure that the drip remained in place I do not know what would have happened.I know that I broke hospital rules as I was not supposed to stay overnight – however, I refused to leave him in that condition without the assurance that there would be someone there for him. They could not give me that assurance as it would have required one to one nursing, which was impossible. Hepatic encephalopathy in reality is a very frightening experience – the person you know and care for is no longer there and it is very difficult to believe that they will return, but given treatment and time, they can.
It wasn’t until morning that Keith finally quietened down, but this also was a worry (thinking of coma) and the relief I felt on seeing his consultant was overwhelming. After four days of treatment Keith was discharged – but this was just the first time.
A fortnight later I could see the signs again – admittedly by this time I was even more tuned in and looking for any aberration, for that first occasion had truly shaken me. This time I took him direct to the hospital’s A&E in a friend’s car as the quickest alternative. He very quickly deteriorated on the journey. Again the formalities of A&E, the same questions, the same wait, necessary but a frustration in itself; again it is useful if youare able to explain the problem and give the consultant’s name/ team to contact – the junior doctors working in A&E cannot be expected to be familiar with the treatment of end stage liver disease. Also they need to know the drugs being used – take them with you.
This time Keith was given a CT Brain Scan whilst in hospital to check for swelling. Also it was decided that his oesophageal varices should be banded. He was discharged, recovered as far as possible, after a week. On the day he was discharged he was told that the 6 month post treatment PCR test had returned positive – the anti viral treatment had failed. Things were not going to get better. Then in January 2006 we received news that the hospital wanted to do another transplant assessment. This was good news as by now Keith was constantly back and forth to hospital with severe problems, often a couple of times each month. In mid-February he was readmitted due to his consultant’s concern and then transferred. This time he was considered ill enough and I knew his consultant was very concerned about his chances of survival – but finally they placed him on the liver transplant waiting list.
I was now being regularly seen by my consultant at the hospital and attending the liver outpatients clinic. I was admitted again to hospital with bouts of spontaneous bacterial peritonitis and Ecoli infection and to have yet more scans and blood tests. My health was worsening daily and in all honesty we expected the worst as the waiting time for a donor organ was six months to a year - and there are more people requiring organs than there are organs available.
With little to lose, we both decided to opt for any type of organ should a liver become available.T he liver transplant education session describes the alternatives and the pros and cons. We lived each day just hoping for the best – i.e. that a suitable organ would become available before my own liver failed completely. Remarkably we didn’t spend each day full of doom and gloom, I even seemed to stabilise and for a period of about eight weeks things remained relatively calm.
Then, out of the blue on a Saturday afternoon in June – just four months after being placed on the liver transplant waiting list, we received the call that an ambulance was on its way to collect us. By 4pm I was in theatre and when I came out at 10pm, I had a new liver (though I wasn’t aware of that until the following morning).
Just three weeks later I returned home. There have been a couple of hiccups along the way but, by and large, my recovery has been trouble free.
I still have hep C, but now I have a future with hope.