Always deeply grateful to donors and donor families, for most of us they will remain anonymous. Sometimes, as Jim Kilpatrick tells us, saying “thank you” can open new doors…
When I was 14 years of age I signed my first Organ Donor card, actually a kidney donor card if I recall correctly, and provided my details for my family to be contacted if I unexpectedly died. I didn’t stop to think that I was being altruistic – it just seemed the right thing to do. To think of doing some good out of something so tragic. Like all teenagers of course, having done it, I just got on with living life. It was the 70s, the world was changing before our eyes and life was good.
I certainly couldn’t have imagined then that over forty years later I’d be the one praying for a new liver in order to keep me alive. In 2017 I’d been diagnosed with non-alcoholic cirrhosis, and by early 2018 my condition had deteriorated to the extent that infections were becoming more of an issue and multiple organ shutdown was on the cards. Thankfully, at 4.20am on 2nd April, I got the call from King’s College Hospital that a potential donor liver had been identified and it was time to get to London. The operation began that night and my recovery was rapid – so much so that I was back in the house again within two weeks. It was all such a whirlwind.
Being able to offer thanks to my donor family was at the forefront of my mind right from the moment I woke up in ICU. I was under no illusion that someone (‘a 64 year old male’ was all I was told) had unfortunately passed away, and that his, and his family’s, wish was for his organs to be donated to help someone he never knew. Life had come full circle, and here was my donor being altruistic, and not me. Suddenly I was the beneficiary of someone else’s selfless decision to help save another’s life.
Just when to write to your donor family is difficult. As the donor family grieve for the loss of their loved one, how could you guess when, even if, such a letter would be well-received? The words you use in your first letter are some of the hardest you’ll try to put together. I know I had maybe ten drafts written before I was happy with what I was sending. All I knew was I was writing to the family of a 64 year old man. He could have been a father, or a grandfather. A son, a brother or an uncle. Or all of those things.
My letter was, by necessity, general in its content – of course I was offering my thanks as sincerely and honestly as I could, but without knowing anything about my donor, I was limited in what I could say. The critical element of the letter though was finishing it by expressing hope that, if they were comfortable doing so, I’d love to know as much as they could divulge about my donor. Equally, I would be comfortable doing the same, and would provide updates on my health. This, I believe, was crucial in how my relationship with my donor family developed. It took around four months before a reply came. Val was very grateful to receive my initial letter, and readily provided me with the essentials which I was craving – my donor’s name (Leslie), some information on his working life and his retirement, and how he enjoyed his leisure time. It was lovely to find at the bottom of her letter, a few words saying how she would indeed like to open up some regular correspondence between us, so that we could begin to learn a little more about each other. I was delighted, especially as she said that my letter brought her some comfort, knowing my health was good.
After a number of letters it soon became evident that we both felt we wanted to move to the same next step – a physical meeting. Discussions with the Donor Family Network, as well as staff from NHS Blood and Transplant, led me to the point where I was able to suggest the use of Microsoft Teams in order to facilitate a first meeting between Val and myself. This occurred in September 2022, mediated by transplant coordinators at both ends. The call was emotional, occasionally tearful, but also remarkably uplifting. By the end of the two hour session Val had introduced on screen her brother and sister in law, who were with her, and I brought in my wife, who was with me at home. We got the clearance from the mediators for the exchange of our personal contact details, so that we could begin communicating directly with each other by phone and online. This was a monumental day for us both.
My daughter was getting married in March 2023, and we decided to invite Val to that. This would be our first physical face to face meeting, and the immensity of that couldn’t be underestimated. She was flying to Northern Ireland to meet us, on her own, at a major family event with all the emotions only a wedding day can bring – a colossal leap of faith and trust on her part. We arranged for a discreet meeting several days before in her hotel in Belfast, which was a wonderful occasion. We were joined shortly after by my immediate family who soon made Val feel at home. The wedding two days later was a fantastic day, which Val greatly enjoyed, and we parted with much still to achieve, but with a sound foundation established for us to build our future relationship on.
We met a further three times this year, the last being when Val, her close family and some friends came to support me for the Donor Run/Walk at the 2023 Transplant Games in Coventry. It was lovely for us all to do the walk together in memory of Leslie and to cross the finish line hand in hand. Our relationship is becoming closer every day, and we are in regular contact, catching up on all the family news at each end.
There is no doubt that we are extremely fortunate to have reached this position. Only a tiny fraction of liver transplant recipients will ever get to the stage where they meet their donor family face to face. Under the right conditions the benefits for both sides can be extraordinary. We are both extremely happy with how things now stand, as are our extended families on both sides, and we look forward to many years of love and friendship in the future. Val is under no illusion that she is now an integral part of our family, and treated accordingly by us all. The same is true with Val’s family, and I know I can turn to them in the same way as I do to my own. We are both truly blessed.