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.

The post Ann’s story: “I called the Nurse-led Helpline in tears and their help was immeasurable” appeared first on British Liver Trust.

I was born with a rare genetic disorder called autosomal recessive polycystic kidney disease (ARPKD), so I have always been aware that I would need a kidney transplant to continue living. But only in the last five years did I realise that my liver was affected by it too and I would also need a liver transplant.

I had a combination of symptoms from the kidney and liver side of things, including headaches, muscle cramps, hypertension, brain fog, frequent urination and fatigue. As my health deteriorated, these symptoms became more frequent and often worse. I would describe a lot of them as my ‘norm’ and I never lived without needing the loo all the time. Only on reflection I can see the impact it was having on my life – constantly having to get up for a wee in the night disrupted my sleep greatly and made it hard to concentrate.

From the liver perspective I developed portal hypertension secondary to liver cirrhosis, meaning I was particularly vulnerable in contact sports. It was frustrating for me being a keen hockey player and skier and resulted in me being less gung-ho in my sport, often deciding it was safer not to play. It’s also difficult for anyone growing up to be different in any way and always contributes to some sort of social anxiety. I’m fortunate enough to have good mates who don’t care if I go on a night out with them and only drink Ribena!

I was put on the transplant list early January 2024 for a pre-emptive kidney and liver transplant. But in April I decided to come off it to give myself time to sit my exams at medical school. I went back on the list in early May and was called a month later.

Waiting for transplant call 

The waiting was the hardest part of the whole transplant process. I felt constantly on edge waiting for my phone to ring and by leaving the ringer on all night I seemed to get more spam calls than ever before. I had some horrible 4am wake-ups which resulted in a lot of sleepless nights. In hindsight I wish I had realised that it’s not just one call and if you miss it – that’s it. The transplant team will try you multiple times and any other contacts they have. I also found it very hard that I was effectively waiting for someone else to pass away so I could continue living my life. It was difficult for my family too to see their loved one have to go through the operation and be in hospital.

The key for me was to be distracted and I tried to pack as much as possible into my day. I was also very fortunate that although I was tired and achy a lot of the time, I was still well enough to do some exercise and for me this has always been an escape from the stresses of life.

The hospital told me about the British Liver Trust, and I found the resources available on the website particularly helpful in consolidating and understanding the pre-transplants conversations with the transplant teams.

In early June I was getting up on a nice day and flicking through the news on my phone when I received the call from the transplant team. They said they had a potential donor so to make my way down to the transplant centre.

I was walking just four days after my liver and kidney transplants and very keen to get out of the door and go home.

Once I arrived all my observations bloods were taken to confirm a match with the donor. I then had a roughly 24-hour wait until I received my transplants. I was very fortunate that my best mate had driven me down to the transplant centre, so the wait consisted of a lot of playing uno and cards (all of which he let me win).

After surgery I was in hospital for a total of 10 days – three days on ICU and seven on the transplant ward.  Pre-transplant, the thought of being in hospital that long really didn’t appeal to say the least – it’s a bit of a rough time and you don’t feel great. I was however incredibly fortunate that the team at my transplant centre were unbelievable, both medically and on a human level. I was walking just four days after my transplants and very keen to get out of the door and go home.

I am also very lucky that I have a good support network around me. Recovery at home was initially difficult with limited mobility and the need to rest frequently, but you quickly progress. Walking up the hall in the house, then being able to walk around the local park the following week gave me a real sense of achievement.

Pre-transplant I was very fortunate to only be on a non-selective beta blocker for my portal hypertension and no other medications. I am on a great deal more medication now. I used to worry about this pre-transplant, but it soon becomes a new ‘norm’ and you find a routine and structure that works for you. That said, immunosuppressive drugs have impacted my day-to-day living. Initially Tacrolimus resulted in me having a few side effects like anxiety, GI side effects and migraines. As I’ve got used to it and the dose has come down, I don’t experience these anymore, only a slight tremor in my hands.

Being immunocompromised

It’s been a new thing for me to be immunocompromised, but it’s sort of like Covid lockdowns – being very good with hygiene, wearing a mask in public (trying to avoid the public if possible) and meeting friends outside and socially distanced. After the initial months of high immunosuppressants I’m planning on going back to university and a normal life.

Although it’s made considerably better by the amazing transplant teams across the country, having a transplant is a life-changing experience and difficult. I was very much the overthinker in this situation, always jumping to worst case scenarios, so I tried to keep hoping it would work out. This protective mechanism is helpful to a degree, but I wish I’d had a bit more faith back.

The whole transplant thing is an emotional roller coaster and I would say to anyone waiting for a transplant: if there is psychological support at your transplant centre please take it or at least try to decide you don’t want it or need it. Stereotypically, as a young guy, I was fairly closed off to the idea of mental health support and had become slightly numb to everything going on around me as a coping mechanism. However, good psychological input can and has greatly improved my quality of life.

The post Andy’s story: “The whole transplant thing is an emotional roller coaster” appeared first on British Liver Trust.

I was diagnosed with polycystic liver disease back in 2014 when I was 31 years old and had just moved to the UK from Canada. Over the next few years, my symptoms increased as the disease progressed. My stomach became very distended as my liver was growing and pushing against my other organs. I wasn’t able to eat a full meal, couldn’t breathe properly, my legs were swelling, I was suffering from muscle wastage and was often in pain. It was miserable.

As my condition deteriorated, I was told that I should consider a liver transplant and I was lucky enough to receive my transplant at the Royal Free Hospital in December 2021, two years after I was listed, just before Covid hit. The transformation is amazing. Like many transplant recipients, the beginning was a bit rough and there were some ‘blips’ during recovery but I’m feeling really well now and am so thankful for all the NHS rock stars who took care of me at my most vulnerable. It’s little things you notice afterward, like being able to bend over and tie my shoe without losing my breath or feeling strong enough to join friends for a hike. I’m still very conscious of how lucky I am to have my life back and what an amazing gift organ donation is.

I’m doing the 3K walk and the Donor Walk  at the 2024 Transplant Games and I’d encourage anyone in my situation to go for it – it’s a fantastic experience!

I work in communications for a financial institution and I was fortunate that my manager and colleagues were incredibly supportive both pre- and post-transplant. I was also lucky to have a job where I could work from home so that I could easily shield during the pandemic and avoid a busy, long commute on the tube.

It was my friend Alison who told me about the Transplant Games. We connected through both having the same liver disease. She told me how fun the Transplant Games were and that everyone was really supportive and just a lovely community. I used to Irish dance but I’m not terribly sporty but thought I’d give it a go.

Last year (2023) was my first Transplant Games and I had a ball. It’s a really special feeling being surrounded by people who all have this shared experience. We all have this deep understanding of what everyone has gone through that you just can’t get outside our little transplant community. Even the most supportive friends and family can never truly understand what we experience, both physically and mentally, as a transplant patient. This year (2024) I won a Silver Medal in the Women’s 3K Race Walking and also completed the Donor Walk. I’d encourage anyone in my situation to go for it – it’s a fantastic experience!

The post Lauren’s story: “Organ donation is an amazing gift and I’ve had a ball at the British Transplant Games” appeared first on British Liver Trust.