Jo and her wife Joanne were looking forward to moving to a new home in the North of England and starting new jobs but things changed when Joanne's health suddenly deteriorated, eventually being diagnosed with late-stage cirrhosis in hospital. Jo shares her story.
In 2020, my wife, Joanne, and I were living a normal, happy life and preparing to relocate from the South coast to the Northeast of England. It was an exciting time for both of us with a new home and new jobs to look forward to but sadly, our situation changed very suddenly.
Joanne was a very healthy woman, regularly exercising, eating a healthy diet and rarely drank alcohol. The only health concern she had experienced in the few years leading up to her diagnosis with a liver condition was waiting for a routine operation to have gallstones removed. She had regular Liver Function Tests via our GP and I understand that nothing came back as a concern.
A week before we were due to move, in June 2020, Joanne began experiencing backache and her stomach began to swell, this continued for a couple more days with the pain worsening, the swelling in her stomach getting bigger, her legs also swelling, and she then started vomiting. I called 111 to get advice and we were told to go straight to A & E.
Joanne wasn’t too concerned at this point and was more worried that she might be wasting the time of the doctors and nurses in A & E but following tests, including a Liver Function Tests, she was kept in overnight. Due to Covid restrictions I wasn’t allowed to be with her in A & E and it was only when a decision was made to keep her in at 11pm that I was allowed in the hospital to drop clothes and toiletries off. I returned the following day to find out that she had been visited by the Consultant on duty in the early hours when she was told that she may need a liver transplant. Joanne was pretty out of it, so I rang the ward, spoke to a nurse on duty and asked if she had liver failure, this was denied. However, she was transferred to a specialist ward when we were told that she had stage 4 liver cirrhosis. Throughout her stay at the hospital Joanne was asked about her alcohol intake.
She stayed in hospital for the next few weeks. During this time, the team caring for her managed her diet and drained her stomach which I now know was with the aim of getting her ready for a liver transplant. Sadly, this did not happen.
When she was discharged from the liver unit three and half weeks later, she was told she was going to be looked after as an outpatient at another hospital. At home, she could barely move and as I had already expected, she would not be physically able to deal with moving house, let alone across the country, so I quit my new job and we stayed with my mum.
Stamp Out Stigma
During the period of July to October 2021, we continued to stay with my mum, Joanne’s condition continued to deteriorate, and she was getting bigger and more uncomfortable. I didn’t feel enough was being done to support her as she only had a couple of outpatient appointments. At all of these appointments, Joanne was asked how much she drank, and it was suggested more than once that the cause of her liver cirrhosis was alcohol abuse. When we said she wasn’t a big drinker, no-one believed us. The stigma we faced was totally unexpected and I think it’s unacceptable that people with a liver condition, whatever the cause, are stigmatised especially when they are so ill and dealing with a life-threatening condition.
From July 2021, I became Joanne’s full-time carer as she was unable to do much herself and could barely walk more than 400 yards. I was beginning to come to terms with the idea that Joanne’s condition may be terminal but sadly, she wasn’t aware of how unwell she was, so we didn’t talk about it. I spoke to a friend who is a senior nurse and she helped me understand what to expect going forward.
In early October, after months of lack of contact and limited support from the Outpatient ward, Joanne became very unwell, she started to vomit, this continued for 3 days so we visited our GP to get some guidance as to what to do and he told us to go straight to A & E. Here she had a fluid test from her swollen stomach which revealed that she had pancreatitis and that her ascites (buildup of fluid in her stomach) was infected. 24 hours later she was transferred to a ward where she was given antibiotics and other medication to treat the infection. They were also concerned about her kidney function, and they discussed putting her in their Intensive Care Unit (ICU) for dialysis. A week later, they did a drain of her stomach which made her extremely nauseous, dehydrated and her kidney function dropped significantly. There was further discussion that she should be ICU, though it was felt monitoring her condition on ward with the help of the critical care team was the best way forward.
The following day Joanne sent me a text to say she was vomiting blood. I went to visit her and found fifteen people surrounding her bed. She had a huge bleed from her oesophagus, losing more than a litre of blood. They took her down to surgery and as they couldn’t stop the bleed, they inflated a small balloon in her oesophagus and put her into an induced coma.
She was in a coma for a week, it was eventually decided that she was strong enough to be extubated (removal of the balloon). The consultant who was in ICU at the time decided this was a good time to tell me that my wife had been a ‘naughty girl’ suggesting her condition was self-inflicted through drinking. Another shocking example of the stigma that we experienced.
When she was brought out of the coma, she was struggling to breathe, and it took her four hours to be able to speak to me. Two days later it took me hours to get through to the ward for an update. When I was eventually able to speak to the nurse on duty looking after her, I was informed that Joanne had a trauma early that morning and had been intubated for a second time. But there was hope. There were discussions about her being fitted with a stent to stop the risk of further bleeds and there were also discussions that she could still be a viable candidate at a London hospital, but this idea was short-lived as she was too weak to be moved to another hospital, so they moved her out of ICU to a ward.
We soon found out that the intubation had damaged Joanne’s vocal cords and she no longer had full capacity to speak in more than a whisper, depleted energy also made speaking and writing difficult, so our ability to communicate properly from this point was drastically reduced. Whilst on the ward she had a further bleed but due to the quick actions of her doctor these were banded off and she was saved a further stay in ICU.
Joanne did however have PTSD (Post-traumatic stress disorder) from her stay in ICU and she asked me to not allow her to return there no matter what.
In late November, I got a text from Joanne asking me to ‘come to the hospital now’ and was shocked to find out that Joanne had been told that she had just 12 weeks to live when she was by herself, during Dr’s rounds when I should have been there with her to support her. Though we were linked in with the palliative care services in the hospital, it soon became clear that the support we needed as individuals and a couple wouldn’t be made available until Joanne was discharged from hospital. It was particularly hard to find out that having been given a terminal diagnosis, Joanne wasn’t entitled to any psychological support because she wasn’t dying from cancer. As it was only terminal cancer inpatients who were able to access this level of support. It was up to me to find Joanne a therapist who would visit her in hospital, which put further strain on our finances.
10 days later we were told the very sad news that nothing more could be done, and that Joanne would need to move to somewhere that offered palliative care. Just a couple of days before Christmas 2021, Joanne was moved to a nursing home. I was able to be there with her everyday taking care of her personally and emotionally.
On 3rd January, we met with the palliative care team to make plans for her final days or months and then only a couple of days later, I heard the devastating news that she only had a few days to live. On 7th January 2022, my darling wife Joanne passed away peacefully, 6 months and 3 days after she was first admitted to hospital.
In her memory, I am passionate about raising awareness and funds, including a 1,600 km virtual walk, to ensure that more families do not have to go through what we went through by supporting the British Liver Trust’s work to improve early diagnosis and tackle the stigma faced by people with liver disease. Find out more here: https://www.justgiving.com/fundraising/Jo-HB2