Make your wishes known on organ donation says triple transplant patient

A Northamptonshire mum is urging local people to talk to their family members about organ donation after an auto-immune condition led to her needing three liver transplants.

Gemma Jolly, 45, from Desborough, is working with Kettering General Hospital’s Organ and Tissue Donation Committee to spread awareness of the importance of organ donation during national Organ Donation Week (September 18-24)

Gemma, who is married to Mike, and has two children, George and Harrison, has auto-immune hepatitis – a condition where her immune system attacks her liver cells.

Gemma, a vocational learning tutor at St Andrew’s Healthcare in Northampton, said: “I was first diagnosed with my condition in 1997 but it got worse over time and I needed my first transplant in 2016 after waiting on the transplant list for a year-and-a-half.

“Unfortunately that didn’t go well and I needed a second transplant in 2019, for which I was on the list for about six months.

“My third transplant was in March 2021 after I was on the transplant list again for about 11 months.

“I had to spend the final eight weeks at Queen Elizabeth Hospital in Birmingham waiting for an appropriate transplant donor - and no-one was allowed to visit me because of the Covid-19 pandemic.

“I kept in touch with my family on FaceTime but I had to go into the operation without seeing my husband who was usually with me for my operations.”

The operation, and Gemma’s recovery, has gone well and the family are hoping to be able to take their first overseas holiday next year for Mike’s 50th birthday.

Gemma said: “Being on the transplant waiting list is very difficult. You have to keep a phone with you all of the time and tell the transplant co-ordinators where you are going and how long it will take.

“There are a lot of people all over the UK waiting like this on the transplant waiting list. While you are on it your life is on hold.

“One thing people can do to help is make their own family aware of what their views on transplant are and register their wishes online.

“Even though we have an opt out system now, rather than opt in, it is still important to be clear on your wishes because the transplant teams will still always approach families to seek their approval for transplant.”

The Chair of Kettering General Hospital’s Organ and Tissue Donation Committee, Nicola Lee, said: “Having a conversation about your wishes around organ donation with your loved ones is very important.

“A two-minute conversation now could mean one day that you save up to nine lives because it is clear you have consented to donation.

“When there is a sudden death through accident or illness families are often very shocked and if you aren’t clear they may be approached for donation and refuse because they didn’t know you would have liked to help others after your death.”

England now has an opt-out system for organ donation, meaning most adults are considered to have no objection to donation unless they have made a decision to opt-out on the Organ Donor Register.

However, families will always be consulted if donation is possible which is why everyone is encouraged to make their wishes known, so that families can honour that decision if the worst happened. You can register your decision to donate today at www.organdonation.nhs.uk.

During Organ Donation Week KGH’s Organ and Tissue Donation Committee is having a stand in the hospital’s grounds near the Trust Board Headquarters Glebe House with information and refreshments on Wednesday September 20 from 10am until 3pm. Some areas of the hospital around Rockingham Wing will be lit-up in pink during the week.