John, 72, Colchester

My haemochromatosis diagnosis came as a total surprise as I wasn’t aware of any symptoms. My sister had been tested as part of a health check and was told to ask her siblings to be tested. Neither of us had ever heard of haemochromatosis before, so we were unsure of what to expect. I went to my GP and was told that I was a carrier and was referred to a haematologist.

On another routine haemochromatosis check up, it was suggested that I had some inflammation in my liver and was referred for a biopsy. My iron levels were still not right at this time. Haemochromatosis can cause damage to the liver if left untreated - as mine was, because I didn’t know I had it for a long time - and I also had primary biliary cholangitis, which is a type of liver disease linked to other autoimmune diseases.

The damage to my liver was irreparable and I was put on the transplant list, as my radiologist had noticed a shadow on my liver that they thought might be cancer. I got the call a few weeks later to say a liver had been found and to potentially prepare myself for the transplant operation.

My surgery went well and I started to recover. Everyone in my NHS care team treated me extremely well, and I couldn’t be grateful enough for the way I was treated before, during and after my surgery. The level of care I received is one of the reasons I believe my recovery went so well, and why I’ve been so fortunate.

If you’ve been told that you need to have an organ transplant and you’re feeling worried or concerned about it, my best advice is to trust your medical care team. They want to help you and want you to recover, plus they experience this situation every day.

My experience made me want to support organ donation as much as possible, to encourage people to donate their organs and make the experience of receiving a transplant as straightforward as possible. I started to get more involved and became chairman of the Colchester Hospital University NHS Foundation Trust’s Organ Donation Committee, which is where I became aware of Haemochromatosis UK.

For anyone who isn’t sure about whether they want to become an organ donor, I would say to just do it. You can change lives, and it’s so easy to opt in. Often it’s just ticking some boxes on a form that you’re already filling out. You can make a difference to so many people’s lives just by being an organ donor, and I will be forever grateful to my donor for what they have done.