In late 2013 my husband was given the terrible news that he had cirrhosis of the liver. He was not a drinker – he enjoyed the odd bottle of beer or glass of wine and I threw more half bottles of beer away in the summer than he drank!. He was a diabetic as was his mother and half his familly. He was Greek Cypriot and ate a well balanced good mediterranean diet. A lot of fruit (probably too much) not so much refined sugars, he did like white bread though.
Originally he was under the Whittington Hospital North London. When he was told the news he was also told that he may need ‘draining’ we did not understand what this entailed or where to go. He was given beta blockers which brought his blood pressure down so low he nearly collapsed – he was given no treatment and our GP did not really understand the situation. He had not been able to eat for months, lost a lot of weight and eventually on Boxing Day 2013 I got him into A&E by ambulance and within 4 hours he saw a Liver Specialist and was admitted. He had an infection, was taken immediately off these beta blockers and got ‘drained’. He was made as ‘comfortable’ as was possible for someone in his position.
He was then in and out of the Royal Free for as much treatment as they could give him –he could not have a liver transplant – unfortunately he did not respond to the treatments available and after suffering but still wanting to live and managing to ‘cope’ he eventually died on 5th August 2014 from NASH.
I have never seen such a horrible death, uncomfortable, painful at times, not much they could really do for him, very little support from anywhere, very little care offered (other than filling in forms!). We coped between us and he tried right up until the end to do what he could. I shall never forget this terrible disease and how little is known about it, how little is done about it and everything that went with it.
On the morning of his death the Royal Free managed to get him into a Hospice (a neighbour had told me about a good one) and it allowed him and me to have some peace whilst we let him fade away.
This disease NASH needs more done to expose it – cancer is bad – I had been with my neighbour 5 weeks before when he died from cancer – a tumour the size of a water melon on his back – so I realise how bad that is too but there is more research, support and care given in that area. Liver disease is always associated with drinkers and therefore gets neglected; more should be done to tell people that children and non-drinkers also can suffer from it.
It has deeply affected me and the family as it was such a horrible disease and my husband so wanted to live and do things. He was a brave man and I saw how he struggled to get himself into the shower and wash even when he felt poorly and he would slowly get himself together and go out to his community centre – he was very independent – we both were. He had been a physically strong man – big in nature and had a size 12 foot – so a big man all around. Smiling and reasonably happy. He was suffering in the end and I felt for a time I was living on ‘death row’.
I can say that I found very little support from any agencies. My friends and work colleagues were very good and other neighbours. I feel that more needs to be done to help people on a practical level.
When he was in hospital I would get up around 5am and get to the hospital before going to work (although I am 64 I still work part-time) and I also look after my 86 year old mother who lives 50 miles away. I did go home about 10pm from the hospital to get some sleep. Before he was taken into hospital I had to cope at home on my own although he did try to keep his ‘routine’ going as much as he could in his poorly condition. I would get home from work and get him a hot water bottle as this sometimes would ease any pain and discomfort that he may have had.
There is not enough research done on this disease, which has become clear to me during this terrible year of my life (one of my worst) and I am now beginning to surface and face the reality of what happened.
A lot more needs to be done to help family and sufferers. Very little explanation is given once the disease is diganosed for example. I am still looking for support groups.
I would also mention that my husband suffered from confusion, which occurs with this illness; an example of this was when I arrived at the hospital one day around 8am and he was saying “I can’t find it” repeatedly – when I asked what he was looking for his said “the sheet” and showed it with his hands” I later remembered from a friend telling me about Alzheimers that they forget how to do things, - he had forgotten how to lay down! The nurses should have been aware of this., they were Not.
I hope my story helps someone.