Justin's wife Lisa was diagnosed with with primary biliary cholangitis (PBC) in March 2020. Here he shares the story of her diagnosis and liver transplant. Thank you Justin.
Symptoms
My wife Lisa was diagnosed with primary biliary cholangitis (PBC) in March 2020, a chronic, hereditary form of liver disease. Since then, our lives have turned upside down, an emotional rollercoaster to say the least. Thankfully, I can consider myself one of the lucky few who has come out at the other end, and I can still wake up next to my remarkable wife.
Lisa’s mum was diagnosed with PBC at an early age, so we have always had a clear understanding of liver disease, and how to manage it. Lisa has always been conscious of her liver, remaining active, and keeping a healthy lifestyle with minimal alcohol. All of which contributed to her positive recovery.
What we did not expect was how quickly everything unfolded and how far along her condition was. The only real symptom that started to show was an itch that slowly became worse and worse, to the point she was itching 24/7. Looking back, perhaps we should have considered this a symptom sooner, but once the insistent itching started to cause her pain, it was her mum who pushed her to speak to the doctor for a blood test. The results came in at 11pm from our doctor – that’s when you know something must be wrong. The doctor explained that Lisa had to be admitted into the hospital as soon as possible. At this time, I was about to start a new job at 6am the following morning that I couldn’t get out of. I had Lisa in the back of my mind the whole day, trying to understand what was happening to us. As soon as I finished work, I rushed back to see her.
Diagnosis
Thankfully the level of care and follow-up was second to none, she received several scans, tests, and a biopsy. The disease was so far developed that they quickly diagnosed Lisa with an aggressive form of PBC called ductopenia.
I spent 10 years in the Parachute Regiment, so I’m no stranger to stressful situations, but watching a loved one go through a trauma like this made me feel completely helpless. There was nothing I could do, the whole process was out of my hands. When it’s yourself, you’re able to process what is happening and work through the pain, but having to watch the one you love suffer such immense stress and not know the outcome is simply horrifying. The only thing I did have control over was offering my unconditional love and support.
I went to a very dark place as a husband. I was emotionally drowning.
Transplant
After only a few short months, we received a call in October informing us of a potential donor for a liver transplant. We never thought that a couple of days later Lisa would be in surgery. We spent two weeks in hospital, everything was completely Covid secure and the staff were incredible. Every day I would stay in the hospital with her for at least 4 or 5 hours. We were fortunate enough to attend our local hospital near our home and family, and with my job providing me some time off, I could make sure Lisa had everything she needed.
I have never felt more emotional and anxious than in the days between Lisa receiving the call, undergoing her operation, and the recovery process. I will never forget the next morning after the transplant. The phone rang at 7:10am and the nurse asked if I wanted to speak with Lisa. I almost fell out of bed. I completely fell to pieces. All my emotions poured out of me at that moment because I knew everything was going to be okay.
Recovery
I am so grateful and in absolute awe of the miraculous work the NHS achieved, and how strong and positive my wife has remained throughout the process. I am also amazed by the level of support we received from friends and family. My phone was filled with messages of love and guidance from so many kind people on Instagram and messenger, it was something that helped keep my spirits up for Lisa’s and my own sake. Thankfully, Lisa has such a strong family unit that we all worked together to keep positive and optimistic.
During this time, I’ve learned the power of communication. By reaching out and talking through your emotions and situation, you gain a support network. This can help you learn from others’ experiences so that you can begin to understand what to expect. This is where the British Liver Trust is brilliant, the Support Groups help bring everyone together regardless of what stage they’re at, making sure no one has to deal with liver disease alone.
We are now both working extremely hard to raise awareness of liver disease. My wife has been actively blogging, sharing her experience on social media, and talking with the press to help educate as many people as possible. We want to raise awareness of what the disease is and how to care for your liver. We also want to help reduce the unfortunate level of stigma attached to the disease.
We both feel incredibly fortunate to have come out at the other end of this journey. I have a whole new appreciation of life, and I am forever grateful to the donor for giving us the gift of life.
