Hello and this is my story…
October 11, 2018 at 9:03 pm #14042
Hi everyone, my name is Ian and back in June I lost my Dad to Cholangiocarcinoma. He passed away a few days after his 71st Birthday which we tried to celebrate with him in hospital. He was a strong, fit and healthy man. He was my rock and best mate. I love and miss him deeply. He leaves behind my Mam, two sons and two grandchildren. It was such a shock to us as he had not been ill for long at all and it was only after his death and funeral that we found out what he had been suffering from.
Roughly six weeks prior to my Dad’s passing he had undergone a routine day procedure for haemorrhoids. Prior to the operation he was seemingly fine. He never really seemed to recover from the operation; he was in discomfort and suffered malaise. He was still active, but just ‘wasn’t right’. Initially we put this down to the operation but when he started to lose weight and develop ‘rigors’ then we knew that something was wrong and he went to see his GP. We were convinced that the procedure had somehow caused him to have an infection. The GP didn’t seem to think so though and ran blood tests which showed elevated liver function tests and inflammatory markers.
My Dad was sent for a scan but the appointment never came through. My Dad’s condition worsened so he went back to the GP and it was then that the GP revealed that my Dad’s scan had been rejected as he had not met all of the requirements! This is something that baffled the GP and still baffles us. Luckily my Dad had private health cover and later that week he had a private scan. There was however an unnecessary delay and the NHS really let us down.
As soon as my Dad had the scan the radiographer told him that there ‘was a lot going on’ and ‘he was a very sick’ man. He was admitted to hospital immediately. The report was that he had sepsis, an abscess on his liver (later we were told abscesses) and a very inflamed gallbladder. They did not know the source or the cause but when we told them about his haemorrhoid procedure, they did suspect that the operation had caused a bacterial infection that had gone straight to his liver.
We were so angry that my Dad was so ill because of a harmless procedure that he wanted to have done simply to improve his quality of life. We were mad with the NHS for refusing him a scan, the GP for not picking up sooner how ill he was and ourselves for not knowing the signs of sepsis and for not getting him the help he needed sooner. There was a lot of confusion, blame, frustration and anger but he was now in a good place, getting the right treatment.
In hospital they immediately placed him on intravenous antibiotics and started trying to grow cultures to identify the nasty bacteria responsible for this infection. They were confident that within a few days the antibiotics would soften the abscess/abscesses sufficiently for drainage and that he would be home within a week. He picked up initially and we were really positive but then over the coming days he developed severe ascites and had to have an emergency laparotomy to drain the fluid (we later found out that this was a massive bleed from his liver). Again he picked up initially, but the following days we saw him deteriorate badly.
The hospital wanted to move him to a specialist liver hospital but there were no beds available and the next day he deteriorated further and needed dialysis as his organs were now starting to fail. Then just as they were preparing to move him under anaesthetic, after we had said our goodbyes to him and that we would see him soon in the other hospital, the drugs caused him to go into cardiac arrest and he passed away despite the best efforts of the crash team. We were just beside ourselves, it was the worst nightmare and we just could not believe what had happened and why it had happened. From admission to hospital to his passing was 10 days. It was a hellish rollercoaster of emotions.
The coroner’s office wanted to put ‘sepsis’ as the cause of death on his death certificate but we had to find out the truth about what happened and what exactly went wrong so an independent post mortem was arranged. Over the coming weeks all we would discuss was how, why, what if and I even contacted a solicitor to potentially take forward a negligence case for us against the health board. I submitted a complaint days after my Dad’s death, in my grief, I was fighting his cause in an effort to find out the truth. Deep in my heart, I didn’t want my Dad to have died from a mistake, human error, a needless procedure. I knew that I would never be able to accept and live with this and it would haunt me for the rest of my life. However the timing of the procedure to his ill health, surely there could not be any other explanation other than sepsis? caused by the operation?
Weeks later, I received ‘that call’ from the coroner’s office. I was on pins and very emotional and I recall bursting into tears when I heard the coroner mention ‘carcinoma’. I didn’t catch all of what was said but I then knew there and then that there had been an underlying cause. The coroner went on to say that it was aggressive and had spread and that life expectancy would have been weeks.
It was a while later that I/we were able to digest all of this and understand what had gone on. I wrote to the pathologist who recently very kindly answered a whole host of questions for me. In short, my Dad had acute inflammation of the bile ducts (cholangitis) and liver necrosis caused by a highly aggressive form of Cholangiocarcinoma. It had spread to his lungs. He fought bravely and never moaned once during his short illness in which there was no doubt that he was in so much pain, but it seems, that he was doomed from the start and there was no getting out of this one. There was no liver abscess/abscesses. The so called abscesses were a collection of tumours on his liver and areas of necrosis.
If you have read this, thank you. I have felt that personally, talking about it and trying to learn about what happened has helped to some extent. I am still in a bad place and miss him every single day but for me, this is now normal grief, having lost someone that I loved dearly. There is no denying this is an evil, vicious, devasting illness that seemingly takes few prisoners.
I would also like to thank Helen for helping me in the early stages of my grief (I messaged the charity not long after finding out about Cholangiocarcinoma). Now I want to do some fundraising and play a small part myself in helping AMMF. I have read all of the stories on the family pages which are completely heart breaking and my thoughts go out to you all.
IanOctober 12, 2018 at 10:21 am #14092
Thank you for sharing the very sad and difficult story of what happened to your father in the run up to being diagnosed with cholangiocarcinoma, and afterwards …
I’m sure many will recognise and be familiar with the frustrations and problems you and your family had to endure. All too frequent with this dreadful disease.
All of us at AMMF are determined to keep working until we have the answers – better ways to diagnosis, more effective treatments and, ultimately, a cure – and we are so grateful to all our supporters for their help in enabling us to continue this work. So, as soon as you are ready to fundraise, you will be a very welcome member of Team AMMF!
With kindest regards
Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.
December 7, 2018 at 9:59 am #14156
- This reply was modified 6 months, 1 week ago by alex.
My heart goes out for you! You have been very strong throughout the incident. Take care. I am glad AMMF was there for youJanuary 25, 2019 at 1:14 am #14512
Thank you very much Steph, much appreciated.February 8, 2019 at 10:34 am #14524
I’m so sorry for the loss of your lovely dad . But unfortunately your story is so familiar in the diagnosis and treatment of Cholangiocarcinoma. I lost my husband in 2016 , age 51 and 6 months post diagnosis, we had no life in that time out and in hospital for sepsis , which they misdiagnosed, He eventually died when the Cholangiocarcinoma travelled to the meninges of the brain , seemingly another extremely rare occurrence.That the hospital also misdiagnosed. The anger you feel at the poor medical care is insurmountable and justified.
I send my thoughts and love to you and your family, what you have been through is truly a living nightmare
love margaret x
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