Jenny was diagnosed with Primary Sclerosing Cholangitis at 29 and went on to have a liver transplant several years later. Thank you for sharing your story Jenny!
I consider myself so blessed to be able to continue living, making happy memories with my family and friends.
In 2011, after a year and a half of tests and medical investigations, I was diagnosed at 29 with Primary Sclerosing Cholangitis or PSC for short, a rare form of autoimmune liver disease and told it was likely I may need a liver transplant in the future.
I was heartbroken, I was newly married and I felt my dreams of a career and family had been crushed with this diagnosis of a disease I had never heard of.
I had several years with few symptoms but in 2014 I started to get more fatigued and was experiencing more abdominal pains. Over the next few years my symptoms worsened, I struggled with a young daughter and trying to work. In October 2016 I ended up in hospital for over a month with a severe cholangitis infection, which affects the bile ducts in the liver, followed by pancreatitis.
"A transplant seemed the only way out"
I had exhausted the possible medical interventions; a liver transplant was my only option to survive and I was assessed and listed in December 2016. I was scared but at this point I felt so unwell and was fed up being in pain and chronically fatigued, that a transplant seemed the only way out.
My blood group was O, as O is a universal blood group it meant if an O liver came along and there was another urgent case, they would receive the liver not me. Consequently, I was told the waiting list can be 2 -2.5 years. I doubted I could wait that long. My life had become about surviving from one day to the next and trying to put on a brave face when around my young daughter. I couldn’t be the mother I’d dreamt of being, it was heart-breaking.
I felt bad relying on family and friends so much, there was so much I was unable to do and my social life became virtually non-existent, my work minimal. Physically my body was not able to function properly anymore and I spent a lot of time sleeping and in pain.
Mentally the wait and persistent symptoms were tough too. At the start of August 2017, I received my first call, but it wasn’t to be. Then in less than 24hours I received my 2nd call, this alongside a further 3 phone calls, were not viable for different reasons.
Each time I had an unsuccessful call it was tough, but ultimately, I knew although I was close and I was still alive, whilst a family somewhere was mourning the loss of a loved one. On my 6th call in October 2017 I finally got my gift of a new liver. The difference within just a few days of the operation was amazing!
"My daughter has her mummy back"
Nearly three years on I am fit and healthy and have been able to live my life to the full again. Every day is a blessing to me and I will be forever grateful to my organ donor. A year after my transplant I wrote to my donor family to share my story and let them know the difference their decision had made to my life. I received a reply. It was so wonderful to hear about my donor who was in her eighties; she sounded like an amazing lady in life and I learnt that it had been her family’s decision to donate her organs , sadly after a tragic accident. Age is not a barrier to donation if you have healthy organs.
Without organ donation I probably wouldn’t be here today, but through the selfless giving of others I am. Through death there can be life. Transplant recipients are testament to this.
My donor lives on through me now. My daughter has her mummy back, my husband his wife and I consider myself so blessed to be able to continue living, making happy memories with my family and friends.