Donor heart recipient, Shane, is urging everyone to have a conversation about organ donation – both in relation to giving and receiving organs:
“My transplant has given me my life back and a future to look forward to. I try to live my life to the full and not take the gift of life for granted, each day is a blessing.”
Shane Smith (28) has shared his story as a reminder of how life-changing organ donation can be. At the age of 14, Shane was diagnosed with a mild heart condition and within a year, his life depended on a heart transplant.
Shane told us:
“At the start of 2009 aged 14 I was diagnosed with mild left side dilated cardiomyopathy. I was playing football every Saturday for the local team.
“Later on in the year while I was helping to coach the younger team, I suffered from loss of vision on the right side coupled with a loss of feeling down the right side of my body. It turns out, I’d had a mini stroke, due to a quickly failing heart. I attended a routine check-up appointment at the Freeman hospital in Newcastle in the November at which I was told that my heart had deteriorated at an alarming rate, which had not been seen before. It was even too dangerous for me to leave the hospital. I thought to myself ‘how could this be, I was playing a football match at the weekend just gone and felt fine’. Looking back, I was extremely lucky to walk off the pitch alive that day.
“I was then assessed and placed on the transplant list to wait for a life-saving heart transplant. I wasn’t aware at the time how serious my condition was which in hindsight was a blessing, as I never considered the reality of not leaving hospital.
“After two months in hospital I was given the call, there was a potential match for a heart for me. It was a feeling I had never felt before or since and one that’s difficult to explain. A mixture of emotions; excitement, relief, fear coupled with the thought and sympathy for the family on the other side.”
It can be several months, or possibly years, before a donor heart of the right size and blood group becomes available. Many people are well enough to stay at home until a heart becomes available, although some people will need to remain in hospital.
“Unfortunately, this heart was not suitable. I finally got another two offers on consecutive days in January 2010, and the third being suitable. Following the transplant, I was told that it was a live donor. This is a process called a domino transplant, where a deceased donor gave heart and lungs to a live recipient and that recipient gave their heart to me. The first of its kind for approximately 20 years I believe.
“To this day I still think about the donor, how are they getting on? What are they doing? Are they still well? It’s the most selfless act someone can do to give life to another person especially one they have never met.”
Sharon Uhrig, Donation Liaison Nurse, explains:
“One person donating after their death can provide life-saving transplants for up to nine recipients; restore eyesight for up to four people; and prevent another six people from going blind. They can also transform lives of a further 40 people through transplanting heart valves, tendon, ligaments, bone or blood vessels and in many cases lives are saved after severe burns by having donated skin grafts. Donation after death is an incredible gift.”
“I am now 12 years post-transplant. 12 years, which I would not have had without the kindness of another person. I am back to playing football three times a week. I achieved a first in a degree in waste management and decommissioning and currently work for Sellafield Ltd. The transplant has given me my life back and a future to look forward to. I try to live my life to the full and not take the gift of life for granted each day is a blessing.
“I think the important message for people to understand is what a difference organ donation can make to a number of lives from the recipient, the family and the friends. Organ donation is something that both my close family and I had never really considered or discussed before but now we consider it normal to discuss. Another way of thinking about it is “would you take an organ if you needed one?” It’s given me the chance to live and I will be forever grateful for the donor for their decision.
“Please have a conversation with your family and friends about your organ donation wishes.”
The law changed in 2020, and people are considered to want donation if they have not registered an objection. Despite a law change last year, the fact is that a family or a next of kin will always be consulted about organ donation.
Most families who don’t know the wishes of their loved ones will refuse donation whereas nine in 10 families support organ donation going ahead if they knew what their loved one wanted.
You can record your decision on the NHS Organ Donor Register.