By his father Martin
This could easily be summed up in four words: Shock, Terror, Fear and Hope.
The first example of ‘shock’ came when our son was diagnosed back in 2007 with a potentially life threatening autoimmune condition. Being told that the condition was rare and that there was no effective cure available other than an eventual liver transplant was a bombshell for the family.
By early 2011 his condition deteriorated to such a state that the decision to place him on the national transplant list brought in the second phrase: ‘terror’. Knowing that our son (Sam) was now so ill that his only chance for survival was a liver transplant was almost too difficult to comprehend.
Being on the transplant list brings with it ‘fear’ and ‘hope’. Knowing what has to happen when that time comes is frightening enough both for the patient and the family, but also there comes with it an overarching need for hope that it will be alright in the end.
It is a sad fact in the UK that there are not enough organs available for the number of transplant patients that so desperately need them. This was true in Sam’s case and his worsening condition finally necessitated me, his father to offer 60% of my liver as a living donor to save his life. After rigorous testing and considerable concerns that once again brought in terror, fear and hope, we undertook the surgery in January 2012. The family now had to deal with two of us undergoing major surgery at King’s College Hospital in London.
Initially it appeared to have gone well, but Sam’s recovery was slower than expected; this was an omen for things to come. He spent two months at King’s fighting problems with rejection and other related issues before finally being well enough to be transferred to the liver unit at Derriford Hospital in Plymouth. He spent most of March and the early part of April being treated but with little improvement. Just four days after finally getting home he was rushed back to King’s and straight onto the liver intensive treatment unit (LITU) in a critical condition and re-listed for a transplant. Within a matter of hours his condition became so bad that he progressed through the priority transplant listing to the top of the so-called national super urgent list. He was put on full life support with the specialist nurses and transplant coordinators preparing us for the worst. We were bombarded with a sense of shock, terror and fear – for the next four days he clung to life by a thread. Finally we got the news that a suitable organ had been found, this was met by with a mixture of relief and hope for Sam but sadness that another family were going through the hell of losing a loved one. With barely hours to live Sam underwent nine hours of surgery that also required a massive 41 units of blood to keep him alive. We were exhausted having been at his bedside almost continuously for over four days and nights. Our specialist nurse gave us updates every hour or so on the progress of the surgery – not always good news but throughout this we had one very dominant thought….hope!
Finally, he emerged from theatre, still on life support but in a much better condition from that when he went in. We looked through all the lines, drips and machines that were supporting him. The shock and terror had passed; there was still fear as he was still critically ill and was described as ‘fragile’ by the LITU staff, but the overarching thought for us was that of hope. He spent a further three weeks in the LITU and there were further complications that hindered his recovery. Each time we were prepared for the worst however we never gave up hope that he would pull through.
Spending so much time amongst critically ill patients and their relatives in the LITU gave us a unique insight to an experience that thankfully most people will never have to face. Complete strangers were thrown together to become members of a very unique club, the additional support that we gave each other during some very dark periods was invaluable. Whenever a patient showed signs of improvement all the relatives shared the joy. However, when things turned for the worse we also shared the grief that followed.
Sam eventually improved enough to be moved off the LITU through the High Dependency Unit (HDU) and onto a specialist liver ward where he stayed for a further four weeks. During this time he had to undertake intensive physiotherapy as his battered body was severely weakened during the six months he had spent in hospital. My wife and I were with him every day and the rest of his family and close friends made regular visits to King’s. Finally in mid June 2012 he was well enough to go home and begin to live his life again.
His journey to recovery continues, looking at Sam now it’s amazing to think what he has been through. We often think of the donor and their family and would like to think that Sam is a worthy guardian of the gift of life.
So, this account does include those four words Shock, Terror, Fear and Hope. It would not truly reflect the story without them; this is the reality of transplant surgery. But the word I would like anyone reading this to take away is that of Hope. Those people who sign the organ donor list offer critically ill patients in desperate need of a transplant just that…..Hope.