Stuart

In the mid-1980s, Stuart received blood transfusions and a bone marrow transplant as part of treatment for leukaemia. He contracted hepatitis C via a blood transfusion administered in one of these treatments. He is one of around 30,000 victims of the UK contaminated blood scandal. Here, Stuart shares his story.

In April 1984, three weeks before my eighteenth birthday, I was admitted to hospital after being diagnosed with Acute Myeloid Leukaemia (AML).

Over the next 22 months I underwent chemotherapy, blood transfusions, radiotherapy and an autologous bone marrow transplant. Unfortunately, the bone marrow transplant failed eight months post-transplant. It was a long journey but after further rounds of chemotherapy I was finally cancer-free.

Life moved on I met my amazing wife to be, Julie, and we bought a house together. I thought my years of ill-health were behind me and that a bright future lay ahead. All that was about to change.

In 1995 I received a letter from the hospital informing me that a blood donor who I’d received a blood transfusion from in May 1984 had been diagnosed with hepatitis C. A blood test confirmed that I had been infected with the virus. At that time there was no cure and treatment options weren’t really available. Life continued on with annual visit to the Freeman Hospital in Newcastle to check my liver health.

Over the years my liver functions deteriorated. In 2007 I lost a lot of weight in just a few weeks. Blood tests confirmed that I had become Type 1 diabetic and insulin-dependent. I was told that the hepatitis C virus attacked the insulin my pancreas was producing and this caused my pancreas to eventually stop working.

In 2009 I was offered a course of anti-viral therapy to try and clear the virus, but this did not work and treatment was abandoned.

Three years later, I was then offered an alternative new treatment consisting of a combination of anti-viral and chemotherapy. The results after 12 weeks were very encouraging having virtually cleared the virus. I continued the treatment for almost a year and successfully clearing the virus.

The liver is a remarkable organ that can withstand a lot. Unfortunately by the time I was cured of hepatitis C my liver had already become cirrhotic. I was told that I was now at a higher risk of developing liver cancer.

I had to attend two appointments a year to monitor for lesions on my liver. I had a few false alarms in 2017, 2018 and 2019. Constantly worrying about your health this way takes an emotional toll on you and those who love you. I wouldn’t wish it on anyone.

Julie and I retired from work in May 2021 with plans for lots of travel. Just two months into retirement I received the devastating news that my latest ultrasound had identified two cancerous growths on my liver. An appointment was arranged to remove the growths using keyhole surgery. There was a high probability that the tumours would return and so after more tests and a physical fitness test I was placed on the waiting list for a liver transplant.

I received my call at 6.30am on the 16 November 2021, just 68 days after being added to the waiting list that they had a liver for me. You can imagine the whirlwind of emotions and thoughts on the journey to the Freeman Hospital that morning.

I eventually went into surgery at 1.30am on 17 November. I returned to the ICU at 8am. I was originally told that I would be on life support for 24-48 hours but thankfully they managed to take me off life support in recovery.

At 3.00pm I was sat in a chair being visited by Julie. I was discharged from the Freeman 10 days post-surgery with a long road to recovery ahead of me. It’s been a rocky road with ups and downs, adjustments to medication and having contracted a virus from the donor organ that made me unwell for some time. Thankfully a couple of courses of anti-viral medication cleared that up.

22 months post-transplant my fitness levels have been seriously impacted by the surgery, but I keep plugging away at it. Mentally it’s been a tough ride, but I remain positive and forever grateful of the new lease of life I’ve been given.

I am forever grateful to my family for their help and support and especially to Julie who has been on this journey with me every step of the way.

My eternal thanks go out to the team of 12 medical professionals who performed my surgery and the countless number that cared for me in ICU, on the transplant ward and the team that are still caring for me.

My greatest thanks go out to my donor, and the donors family who carried out their loved ones wishes and allowed their organs to be donated. Thanks too to everyone within the NHS who has cared for me over the years I’ve been infected and still continue to care for me since my transplant.

I am so grateful to still be here and I will continue to campaign for justice for everyone who has been impacted by the infected blood scandal – especially those we have lost.