This week, 7 – 13 September 2020, is organ donation week.
On Christmas Day 2013, I received the most incredible gift; a new heart. In order for that to happen, my donor made the decision to allow their organs to be used after their death. A decision they would have taken when they were fit and well. Their family agreed to honour that decision on Christmas Eve when they were neck-deep in grief. Their kindness and generosity of spirit saved my life. It is something neither I nor my family and friends will ever forget and for which we remain forever grateful.
In my family we are doubly grateful. I’m not the first to be saved through heart transplantation. Over a decade earlier my father received a new heart, his at Easter. We consider ourselves an extraordinarily lucky family.
Nothing can prepare you for the sheer magnitude of being told you need a heart transplant. The idea of my living, beating (albeit not that well) heart being cut out of my body and replaced with that of another, was way too much for me to contemplate for any length of time (still is). The awareness that in order for me to have a chance of survival, to have a future, someone else was denied theirs. It never leaves me.
The best way for me to honour the life of my donor is to live mine to the very best of my ability. Of course there will always be time when I get stressed, or annoyed, or short-tempered, or down. There are days when I feel fat, or my hair annoys me, or I can’t find anything to wear. For a while I struggled with these feelings; believed I was somehow doing a disservice to the memory of my donor. For a time I put myself under too much pressure to be happy all the time. But not anymore. Now I accept all feelings as being part of who I am. The trick is not to dwell and to keep moving forwards.
In March next year, the organ donation system in Scotland is due to change to a soft opt out. Instead of signing up to be an organ donor, the onus will be on people who do not want to donate their organs to opt out. The hope is more organs will be available. I used to shudder at the reference to ‘organs’ and not to the person. Organ donation will always be an emotive issue. The reality is, the living, breathing person the potential donor once was, is no more. They live on in memories and shared recollections, not in body parts they no longer have a use for. I understand now why it makes sense to separate the personal from the medical.
When I first had my transplant the thought of my donor’s family and friends grieving for their loss haunted me. I struggled with whether I was ‘worth’ my new heart. Over time, and with the help of members of my medical team and the transplant clinic at the Golden Jubilee Hospital, I came to terms with the fact that my donor’s death had nothing to do with me. It happened regardless of my need for a new heart. The decision of my donor to sign the organ donation register was what connected us. I think of that often and it makes me smile.
“… heart transplantation is the closest thing to a miracle.”
Last week, Paul and I premiered a video we made about our transplant journey with the Public Health, Private Illness conference. If you would like to watch it, you can do so using the link at the bottom of the page. The video is personal and it was difficult for both of us to relive our experience in this way. We did it because we feel strongly that we should play our part in raising awareness of heart transplantation and organ donation.
For me, heart transplantation is the closest thing to a miracle.
Everybody who receives a heart transplant would die without one.
Paul and I recorded the video below to share a wee snippet of our story and to help raise awareness of organ donation. It’s about 15 minutes long.
If you aren’t already, please consider signing up to be an organ donor.
In Scotland: https://www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-scotland/
For the rest of the UK: https://www.organdonation.nhs.uk
Angela Hughes 