In 2008 I was a 45-year-old mum of three, my dad has just passed away, I was doing my nurse training, working hard and feeling really tired. My doctor said it was stress and suggested a blood test.

Because I had no symptoms I left it for a while until one morning at work I felt my blood sugars were low. I had the blood test and the doctor came to find me that night because there was something wrong with my liver and I was admitted immediately.

The doctors didn’t know what it was at first and asked me if I drank or took drugs – I didn’t. They then sent me for a scan which showed my liver had shrunk to the size of my fist, so I was blue-lighted straight to Birmingham for a transplant.

That was the Wednesday night, I was given 72 hours to live and listed super urgently. By Saturday they had a potential liver but said it was too big and they could wait another day, then on Saturday night they got another one and I was transplanted on the Sunday morning.

Hepatic encephalopathy

It all happened so fast, but I couldn’t think straight because I had HE and was very argumentative with the nurses, although I would apologise afterwards because I’m not that sort of person! After the transplant I was in for two weeks and remember having a Chinese nurse who was an angel, but the food was awful. Pre-transplant you’re given everything possible to make sure you’re as healthy as you can be, but the first meal I had post-transplant was fish and chips with cold, rock-hard peas. People were bringing me in food from home.

After I was discharged I had to keep going back every three days and take an overnight bag with me in case I needed to be readmitted. Derby to Birmingham isn’t the best trip to be making when you’ve got a massive scar that’s still healing, but it was during one of these appointments that they discovered I was experiencing rejection. I spent six days in intensive care while they stabilised me and my doctors told me to prepare myself for the worst. Everyone was round my bed and my friends helped me to make a will to ensure my girls benefited from everything I had, but I recovered!

When I first had the liver transplant I thought I looked awful and would never be normal again, but then I saw a poster about transplant sport

Later, I also had a lot of ascites and two hernias, I looked like I was six months pregnant so I was admitted to have a stent put in. My weight had dropped to seven stone at this time, I’m normally ten and the doctor sent me home because I was malnourished and the hospital food was so awful.

When I first had the transplant I thought I looked awful and would never be normal again, but then I saw a poster about transplant sport in the hospital canteen. The people in it had been through the same thing as me, but they looked normal! So as soon as I was fit enough, I got in contact with them and never looked back. I had my first World Games in 2010, representing Great Britain and I’ve taken part in them ever since.

I tried swimming at first but didn’t really like it, then decided on cycling because you could do without joining a club. I went from owning a crappy bike to getting a better one and training more and more.

The first medal I got was a bronze in Sweden, which I didn’t expect to get and the first Gold was in South Africa where I was competing with one of my closest friends. On the first race I stopped at what I thought was the finish line, got off my bike and started walking, but then people were shouting: “You’ve not crossed the line!” so my friend got the medal for that. The following day I decided there was no way she would beat me again and, this time I knew where I had to stop and got my first Gold medal. I’ve won six more since then!

Donor’s family

I’ve written to my donor’s family three time and told them what I’ve been doing, but I’ve never heard back. I’m so grateful to them because they respected my donor’s wishes and I’ve had 17 more years with my family than I otherwise would have done.

I’m sharing my story because people need to talk about organ donation and share their wishes more with their friends and family. There are so many people who want to donate but their families stop it, so it doesn’t happen. When you’re at the World Games you see all the people whose lives have been saved by somebody else and the donor families take part too and they find it so uplifting.

If you’re waiting for a transplant you’ve got to stay positive and don’t feel your life is over because it’s not. Apart from a scar and someone’s liver inside me I live a normal life and so will you.

The post Diana’s story: “Thanks to my donor, I’ve had 17 more years with my family than I otherwise would have done” appeared first on British Liver Trust.

I was diagnosed with Primary Biliary Cholangitis in 2007 and didn’t experience any symptoms before that or over the next 17 years.  After being put on medication for the PBC my bloods were always normal. I had an annual screening for cancer as I learnt that with my condition I was predisposed to liver tumours. I also went for liver scans annually at my local hospital in Stoke on Trent and was clear until 2022 where one, then two, tumours were found.

I was told a liver transplant was the only route for me which was totally shocking as I felt normal. I underwent chemotherapy with a procedure called TACE to bridge some time while on the waiting list for a transplant and again had little symptoms post chemo (I was lucky, I guess).

I then received THE call early in 2023, four months after going on the transplant list and with a few previous false alarms I went for surgery to the Queen Elizabeth hospital in Birmingham. My donor was a person who had suddenly died and with my previous profession as an intensive care physiotherapist I knew such donors are like gold dust. I questioned the surgeon doing my operation “How come I’m getting this liver?” and the answer was astonishing. He/she said: “Your liver is recycled”. So I was receiving an organ from someone who had been a transplant patient.

Quoting my father as to whether to accept this organ was an ‘an enigma wrapped up in a dilemma’.

What were the added risks? What of the increase in antibodies as this liver had travelled through two other people before coming to me? Have I now three armies of antibodies fighting this organ? No-one could answer the questions easily as available data is scarce as only 10 other people world-wide had undergone this surgery.

Liver tumours

The medical staff were reassuring in explaining that all eventualities could be treated with medication and they would be super-vigilant in my case. My family and I discussed the situation and we all came to the conclusion that I was super-fit for surgery and if there were to be any problems, I was well equipped to deal with them. So we agreed to go ahead. Alarmingly another tumour was found during the operation – my liver was a ‘tumour-making machine’ and so I would have deteriorated very quickly without the transplant so the timing was perfect.

I am reluctant to know how the other 10 patients are getting along health wise. It’s such a low number of case studies and statistically I’m not sure if they are in my favour.

Surgery went extremely well, hospitalisation didn’t bother me as I am so familiar with the environment including ICU. I was totally at ease with the monitors, procedures and if I, as a chest physiotherapist, could not manage my own physio…simply no excuse.  So I self-administered all the physical therapy and, quoting my children, ‘You smashed it, Mum’.

I’m not saying it has been an easy journey, the anti-rejection meds have their own risks and this is the price you pay to stay alive.

I have been readmitted with gastro-enteritis, self-inflicted with food poisoning we think, from my French husband’s cooking! There was another admission in August, scarily, I was not unwell at all, but my bloods were not right. A biopsy revealed severe rejection which was treated very successfully with Prednisolone. What a way to spend my 66th birthday! More recently I had a potential problem with kennel cough, but that is another story.

Being the owner of a ‘pre-loved’ organ I am acutely aware of the lack of available, useable organs

Being the owner of a ‘pre-loved’ organ I am acutely aware of the lack of available, useable organs and the process needed to get there. Through working in ICU I have treated heart, lung and kidney transplants (recipients?) and helped ‘keep alive’ people who are potential organ donors by doing chest physiotherapy.

I have since met many organ recipients when I attended the British Transplant Games in Coventry in 2023 as a spectator. I also went to a golfing event at the Warwickshire golf club with my son, where I had the pleasure of meeting like-minded folk all with amazing stories to tell. I have set up a Golfing Society based in the Midlands called the Mulligans – a term used in golf to give you a second chance. We had our inaugural Golf Day in May this year and attendees consisted of transplantees, people who had donated organs as a live donor but also family members who had donated their loved one’s organs when they died. It was all very levelling and not a dry eye in sight. There has been a lot of interest nationally and I would like to set up golf societies to represent every corner of the UK.

The anniversary of my operation rendered me very emotional as I reflected on the families mourning the anniversary of the death of their loved ones, but as one of the consultants said: ‘Remember they volunteered to donate their organs’.

I plan also to rekindle my love for squash as I am a regular racquet ball player and maybe enter the Transplant Games in the over-60s category, paracetamol on hand!

Organ donor wishes

In summary, I would say the case of all people who have received organs there is no easy way to show your appreciation because of the trauma other people have endured. The least I can do is help to spread the word as I also know how many people, young and old die whilst waiting on the transplant list.

I’ve also learnt that despite the National Mandate where we are all donors unless we opt out that families can still reverse that policy simply because they are unaware of what their loved ones would have wanted. The message here is: tell your family your wishes and spare them the heartache of making that decision.

I have been lucky from the start and I will never undervalue the team, the process and the outcome.

On each anniversary of my transplant I will be happy but equally sensitive to the two families who are remembering their loved one. I was widowed 33 years ago and July 21^st is still a poignant day for me.

But now, hopefully, I have a long life ahead and a duty to perform.

The post Mandy’s story: “I was receiving an organ from someone who had themselves been a transplant patient. What were the risks?”  appeared first on British Liver Trust.

I received my liver transplant on the first day of spring 2014; it felt very apt. I had always been the fittest person that I knew, with family demands, a full-time job, as well as being a District Commissioner for Guides and a kayak coach. So when I started to feel tired I was concerned that I had a heart condition. Several years later, and a move from Buckinghamshire to the North, I was finally diagnosed with Primary Sclerosing Cholangitis (PSC). Four years after that I was the lucky recipient of a new liver.

I went to the British Transplant Games in Cumbria the following year – I had practiced badminton in the back garden with the help of my husband and a northerly wind! I was rewarded with a bronze medal for badminton and a silver for volleyball – something that I hadn’t played since school.

Each year since then I have tried a different sport – something outside my comfort zone, like the 100m, then the 200m, shot putt and javelin – it was all great fun! I rediscovered tennis which, again, I hadn’t played since school. I turned up to the tennis tournament with a few coaching sessions and lots of misplaced optimism. Since then, I’ve continued with the coaching and it’s one of my hobbies – I play at least three days a week.

On the strength of my medals, I have been selected to represent GB&NI in tennis and athletics, and last year we went to the World Transplant Games in Perth, Australia. What an amazing opportunity and experience, who would ever have thought that something as negative as a rare liver disease/transplant could lead to such a truly fabulous experience.

I won a gold medal in archery at the 2024 British Transplant Games in Nottingham. I really didn’t expect it but was delighted to win it. I was equally delighted to win a European Gold medal for pétanque and a European silver medal for tennis in the European Games in Lisbon, held a week before the British Games.

Now back down to earth, the British Transplant Games are a fantastic way of meeting people who share your experiences. I know at least four other people with my rare disease and they all have the same strength and determination to succeed. I would hate to be defined by my condition, so the Transplant Games have given me new ambitions, challenges and lots of shiny medals.

The British Liver Trust is a great source of information for people living with liver disease. I was very pleased to be part of its Online Support Group that included pre and post-transplant patients. The pre-transplant patients found it invaluable because they were able to see what the future could hold for them, while the post-transplant patients were delighted to talk about their experiences. It began during the Covid lockdown and has continued, it helps people feel less isolated and more knowledgeable and, as we all know, knowledge is power.

The post Andrea’s story: “The Transplant Games have given me new ambitions, challenges and lots of shiny medals.” appeared first on British Liver Trust.

Jenny received a liver transplant in 2021 and by 2024 she had taken part in the British Transplant Games three times, an achievement that seemed unimaginable when she first became ill.

Jenny had previously been fit and active, but received an urgent liver transplant after suffering sudden acute liver failure in May 2021. She said: “It was a complete shock to me. I went from feeling inexplicably ill to waking up to be told I had had a liver transplant.

“I felt so weak, and I knew that recovery would be a long road. However, when the doctors heard I was a keen cyclist, they told me about the Transplant Games and the thought of being able to compete the following year was a real motivating factor.”

Having only recovered in time to compete in the 2022 Games in Leeds, Jenny took gold in the 10K race and raised more than £2,500 for transplant recovery research. The same year she won two bronze medals at the European Transplant Games and in 2023 she took part in the World Transplant Games in Australia, bringing home two gold medals.

She was hoping to add to that collection at the 2024 British Transplant Games in two cycling events and the 5k donor run, but said: “The most important thing is to be amongst my transplant teammates, taking part in the event and raising awareness for transplant health and well-being.”

The post Jenny’s story: “I went from feeling inexplicably ill to waking up to be told I had had a liver transplant.” appeared first on British Liver Trust.

I was diagnosed with NAFLD, which progressed to NASH in 2016,” she explains. Prior to that, I had been an advanced Practice Radiographer with the Royal College of Radiographers and then became a manager at South Tees Hospital, but I had taken voluntary redundancy as I could no longer manage full time work, and I got a part-time job.  I just didn’t realise how poorly I was.   

In the middle of Covid, August 2020, I developed a small lesion on the liver. By November of that year I was finding even part time work too tiring. I found everything too tiring if I’m honest. Plus, the brain fog made life difficult especially at work.  In March 2021 I was put forward for transplant, underwent various tests and was listed for transplant at the beginning of June.  

It was around that time that I joined a support group run by the British Liver Trust. It was a life saver, I met people who understood how awful I felt, who were going through the same things I was. I made some friends who will be friends for life. To be able to talk to transplant recipients and see some light at the end of the black tunnel I was in was such a help to me. I could see how the transplant had changed their lives. I will always be grateful to the BLT for making that happen.

I received my liver transplant in October 2021 and my thanks are never ending. 

Now I have a new kind of normal, there are some differences following transplant- immunosuppression. I also developed diabetes due to the transplant and my kidneys suffered a little. I never got to go back to work.  

BUT it is a life a never thought I would have. To see my grandchildren grow and to be an active part in my family again is amazing. I will never be able to thank my donor and donor family enough.  My donor was an amazing man who cared for others and wanted to make a difference if he passed away. He discussed it with his family, and they followed his wishes.  

I feel like a new person which is why I want to make the most of the gift of life.  I want to raise awareness of how important donating an organ is to so many people, how vital it is to tell your family of your decision, so that the painful decision they have to make is that tiny bit easier, knowing their loved one’s desire. 

I want to try new things. I did pétanque and archery at the Games and got a silver medal for the latter – I was just two points off gold, but for me taking part is what counts. It’s something I never thought I would be able to do, ever.
 

The post Christine’s story: “I will never be able to thank my donor and donor family enough. I feel like a new person” appeared first on British Liver Trust.

The 31-year-old, who received a liver transplant last year, is heading to Nottingham for the Games which take place from August 1 – 4. This will be the first time Jamie participates in the event, where he will compete in football and the 1500m. This achievement seemed unimaginable even 18 months ago.

“I was born with the rare liver disease, biliary atresia,” says Jamie. “I had surgery when I was three weeks old, which averted the need for a transplant at the time, but years down the line, I developed cirrhosis and then a clot in the portal vein on my liver, which led to my transplant in March 2023.

It’s vital to make people aware of the importance of being a donor and what a positive impact it can have on someone else’s life.

“Fitness has always been an interest of mine. I go to the gym four times a week and cycle to and from work and feel great for it. So the Transplant Games really appeals to me and I’m looking forward to it. I’m quite competitive anyway and believe this is a great cause.

It’s vital to make people aware of the importance of being a donor and what a positive impact it can have on someone else’s life. It’s because of organ donation that I can enjoy my life with my partner Olivia and daughter Maia, and I’m so grateful to be here with them.”

The post Jamie’s story: “The Transplant Games really appeal to me and it’s a great cause” 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.