My liver transplant journey, Heather Berry

Heather Berry, 39, has been working in our emergency service for 16 years. She started as a call handler and is now a paramedic working in our clinical hub, helping patients who do not need an ambulance by giving them advice over the telephone.

The past four and a half years have been tough for Heather after needing a liver transplant. She shares her story to raise awareness of organ donation.

Heather who lives in Leyland, was born with a rare liver condition called Biliary Atresia in which there is a blockage in the tubes that carry bile from the liver to the gallbladder. She had an operation when she was just eight weeks old to remove the diseased bile ducts and reestablish bile flow from the liver using a portion of the intestine. Heather’s parents were told this was a short-term solution and that she would deteriorate and need a liver transplant before she was a teenager. Heather was subsequently monitored by hepatologists throughout childhood and was on medication until she was a teenager.

“I had a few admissions to hospital in my thirties for pain and sepsis but other than that I had managed to stay well. But three days before Christmas 2019, that changed. I awoke jaundiced after going to bed the previous night without any, which was alarming and frightening. I was referred to St James University Hospital in Leeds to see the transplant specialists and was placed on the transplant register in 2020 for a liver transplant.

“I was initially advised it would be a six-month wait but then, of course, COVID-19 hit, and six months turned into a three-and-a-half-year wait for my transplant.

"Within this time, I remained at work, but my hospital admissions increased as my condition deteriorated significantly, ending in liver failure. I was placed at the top of the list as an absolute priority. I was scared and worried when I found out I needed a transplant, but I accepted it well as I knew it was inevitable. All I could do was wait and hope.”

When Heather finally got the call on 6 July 2023, she had just gone to bed ready for her night shift the next day. She said: “I had been working a day shift on the day that I got the call to say they had a liver donation for me, and I needed to go for the transplant. I was called at 1:55am and needed to be at St James Hospital in Leeds by 4am.

“I was shocked, emotional, scared but also excited and relieved. There were a lot of tears, I rang my parents and my best friend (fellow paramedic) Leigh - there were many emotions and tears from them too.”

Heather reflects on the three and a half years she waited for her transplant: “It was horrible waiting so long; life was completely on hold. I had to always remain within two hours of St James Hospital, my phone had to be constantly on, and I was required to carry a hospital ‘go bag’ with me wherever I went. The deterioration in my health meant I became increasingly worried that I wouldn’t get a new liver on time and would die.

“I did however remain at work, both in the clinical hub and on the road in south Lancashire, even working through the pandemic. Despite the risk to my own health, I didn’t want to abandon my colleagues during this time as it was a very difficult time for everyone. I did everything I could to remain fit, healthy, and as positive as can be, both for myself, my daughter, and the rest of my family and friends. I was scared but didn’t admit it.”

The past 11 months since the transplant have been quite a rollercoaster for Heather and her daughter. “I experienced a few episodes of liver rejection, which the consultants and surgeons struggled to get under control. I have spent more time as an in-patient at St James University Hospital than at home as an outpatient. I got recurrent infections that required extensive intravenous drip treatment and ended up with multiple stays in intensive care. I became very unwell.

“I had to learn to walk and gain strength and mobility back. I lost a lot of weight also. In February I underwent another operation to increase the length of the Roux loop in my liver to try to prevent backflow of bile and waste into the liver that was then becoming infected.

“It’s been hard to try to recover, I’m still healing and trying to get back to normal fitness now. I’m still experiencing fatigue and illness and finding the balance of being more active without doing too much is hard to get right. My managers have been very supportive for which I am also very grateful.

“It’s been difficult for my 14-year-old daughter, spending so much time away from her, trying to reassure and protect her has been very tough and I know she has really struggled too. She has made me very proud of her and how she has coped with everything.

“It has also been a tough financial struggle. I have been very fortunate that I’ve had help from family and friends for which I will be eternally grateful.”

Heather has returned to work gradually within our clinical hub. She hopes to return to the front line to get back to the face-to-face contact with patients that she loves but she is not out of the woods yet: “I am on anti-rejection medication and will be immunosuppressed for the rest of my life and will be under constant care of St James University Hospital and the post-transplant team there.

“There are so many things I didn’t expect though post-transplant. I am now high risk for skin cancer so advised to wear factor 50 sun cream, even in England on a mild day. I cannot drink still bottled water, eat raw fish or seafood, pro-biotic or live dairy products, deli meats or cheeses or certain kinds of ice cream. I am advised to not have ice in my drinks when I am out. Most of these are due to the risk of infection or hepatitis. I’m not allowed grapefruit or any product containing it as this counteracts the antirejection medication.

“I have been given the most amazing gift that anyone could ever receive - the gift of life. I am eternally grateful to my donor and his family. I have personally decided to never drink alcohol and will do everything I can to protect it.

“Organ donation is not an easy decision at such a difficult time, but we must have organ donors to enable people like me to go on living. I would advise and encourage anyone to be an organ donor or to donate family or friend’s organs if asked to do so. The wonderful gift of my liver donation also enables me to return not only to my private life but to my work life so I now can go on to save or change other people’s lives.”