"I called the Nurse-led Helpline in tears and their help was immeasurable"

Ann was in excruciating pain and going backwards and forwards to A&E when she called the Nurse-led helpline and is grateful for the support and advice she received from an expert in her condition. She has now also joined the Trust’s online transplant support group while she waits for her liver transplant. Thank you for sharing your story, Ann 

Before I contacted the British Liver Trust’s Nurse-led helpline in October 2023 I felt so lost – just thinking about it makes me feel emotional. I was getting no answers on my condition, the wait on the NHS was really long and I was trying to hold it together, but not managing.

In 2012 I was pregnant and having a scan when the radiographer said, in passing, that I had cysts on my liver and kidneys. In approximately 2018 my dad was diagnosed with polycystic kidney disease and following a recommendation from my dad’s consultant I had an ultrasound to check if I also had the condition. The cysts on my kidneys and liver were then confirmed and I was referred to my local kidney consultant who agreed to monitor me yearly. In 2022 a radiographer recommended I had my cysts drained as they were so large, however I was then told by my local hospital they would never drain cysts and it was left at that.

At that point my symptoms were worsening, but by 2023 I started to feel a burning and pulling pain and had a swollen tummy. I was also feeling increasingly tired throughout the day. In October 2023 I went to A&E because the pain had become excruciating. I was in hospital for four days – a CT scan found the cysts were covering my liver and it was also mentioned that I might need a liver transplant in years to come. I was discharged with Buscopan which didn’t help at all. I asked my GP to ensure I would be referred to a hospital with a liver unit and I got an appointment for the end of February.

I had to reduce my work hours because the fatigue was so great and on Christmas Eve I went to A&E again because I was in so much pain. I went back a few days later and on both occasions I was given morphine as a one-off and sent home.

Nurses always listened

I found the British Liver Trust’s Nurse-led Helpline by Googling – I didn’t know anything about the Trust before – and I called them in tears. The nurse I spoke to was so kind and was able to refer me onto a nurse who had worked with patients who had a diagnosis of polycystic liver disease and her help was immeasurable. From December through to February I called the helpline every month and they always listened to me. They advised me to keep going back to A&E, but A&E kept giving me morphine and batting me away saying I would be seen by the liver team.

I finally saw a liver registrar in February 2024 who explained the cysts were covering my whole liver and couldn’t be drained because they would just keep growing back. A hepatectomy which involves removing part of the liver also wouldn’t be possible because I would have no healthy liver left, so we were looking at a liver transplant. He said I would be discussed at the liver MDT in March. There were a lot of NHS delays between February and March. The BLT nurses gave me their full support during this anxious time. I found that the British Liver Trust filled the gap where the NHS were under such pressure.

I was admitted to the liver unit as my symptoms were so great and was also seen by the pain team. Now the pain is under control and I can sleep

I was discussed at the Liver MDT in March and it was decided I would be put forward for assessment for candidacy for liver transplant. In June 2024 I was admitted to the liver unit as my symptoms were so great and the assessment was completed as an inpatient. I was also seen by the pain team as an inpatient to get my pain under control. I was prescribed pregabalin twice a day and amitriptyline at night which means I can now sleep. I’m also on a slow-release morphine and another type of morphine four-hourly which means the pain is under control.

I was accepted onto the transplant list on 19th June and am looking at a wait of one to two-and-a-half years, but at least now I’m having my bloods done monthly and being seen regularly by a consultant.

I’ve worked as an Occupational Therapist for 20 years and it is not easy being cared for rather than being the care giver. The British Liver Trust have helped me to keep a positive mindset. My consultant told me to keep myself well for the transplant so looking after my health and wellbeing is paramount.

Support groups

I have also joined the British Liver Trust’s online support pre and post transplant group where I can talk to other people who are waiting for a transplant and who have had liver transplants. I also find their online education sessions very informative.

Without the British Liver Trust, I wouldn’t have been able to cope as well as I have psychologically. If anyone with liver disease is in a place where their symptoms are really bad and they’re not being listened to, just call the British Liver Trust and get some advice. I want people to know that they’re not alone and there is help out there because it can be very lonely.

Organ donation is such a beautiful, life saving gift. I am eternally gratefully to all those who are registered to donate.

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